In Your Words - Community Magazine, Spring 2015 by Caring Voice Coalition

COMMUNITY Volume 4 • Issue 1 • Spring 2015 • The Quarterly Publication of Caring Voice Coalition, Inc.

A special issue voiced by caregivers & patients living with chronic illness

PLUS

Are you complying with your medications? Newsmaker Q&A with Gerard Salen, MD: causes, symptoms, treatment of CTX Patient Association Proﬁle, The Myositis Association

livingpah.com

TO SHARING YOUR EXPERIENCE Living PAH is a free resource offering information and tools to help you take a more active role in your care. It is a community where individuals, groups and programs unite in the idea that far more is possible when we work together.

Visit LivingPAH.com, which features a tips section that collects the experiences of patients, caregivers and family members dealing with PAH. You can learn from others or share some advice of your own. Your experience may be just what someone else needs to hear.

ENROLL TODAY AT LIVINGPAH.COM

CONTENTS

SPRING 2015 In Your Words

4 Contributors’ Page 5 Editor’s Letter 6 Vice-President’s Letter

9 CVC Close Up

CVC Case Manager Heather Fortune describes how her family fueled her passion for helping others.

16 Brothers in Arms

Twin brothers Javier and Omar Estevez were both diagnosed with sarcoidosis and pulmonary hypertension and understand the value of a solid support system.

11 Newsmaker Q&A

Community discusses cerebrotendinous xanthomatosis (CTX) with Gerald Salen, M.D., gastroenterologist at Rutgers New Jersey Medical School, who is a leading expert on the disease.

13 Breaking Barriers

18 Patient Association Profile

John Wolf became a leading advocate for cerebrotendinous xanthomatosis (CTX) patients after his daughter was diagnosed with the disease.

14 Your New Normal

In the second of a four-part series, certified educator and health coach Colleen Brunetti walks patients through the steps of a support cycle by using the power of their words.

Theresa Curry, The Myositis Association (TMA) communications manager and Outlook editor, details how the organization helps patients and families.

24 Lessons to be Learned

As a caregiver, Larry Harris is taking a healthy approach to his wife's Huntington's disease, one day at a time.

20 A Walking Miracle

26 A Dose of Adherence

22 Optimistic by Design

28 Overcoming Obstacles

Linda Carter describes how her myositis diagnosis in 2008 awakened her appreciation for life. Having lived with nephrotic syndrome for 37 years, Suzanne Hemphill takes a positive approach to educating others about the illness.

Robert Mayfield, M.D., explains the importance of adhering to your medication regimen. Kathleen Darrell finds purpose in her life with idiopathic pulmonary hypertension and idiopathic pulmonary fibrosis.

Staf f

Publishers Pamela Harris pharris@caringvoice.org Samantha Harris sharris@caringvoice.org Advertising Disclaimer Any references to products, services or health care providers in this magazine are not a recommendation or endorsement of products, services or providers.

Publishing Editor Robin Lawson 888.267.1440, ext. 188 rlawson@caringvoice.org Medical Disclaimer The information provided in Caring Voice Community is not a substitute for professional medical advice or care.

Director of Communications

Graphic Design & Illustration

Jennifer Previtera 888.267.1440, ext. 141 jprevitera@caringvoice.org

Charlie O'Donnell 888.267.1440, ext. 130 codonnell@caringvoice.org

Please recycle this issue.

Contributors

Colleen Brunetti

Larry Harris

Colleen Brunetti is a certified educator and health coach. Diagnosed in 2008 with a critical lung disease, Brunetti also works as a patient advocate and leader in her patient community.

Larry Harris’s wife, Mary Jo, was unexpectedly diagnosed with Huntington’s disease (HD) in 2014. As her caregiver, Harris is planning for their future, in part, by improving his own health. The Harrises have one son, and enjoy gardening and attending concerts and shows together.

Linda Carter Myositis left Linda Carter paralyzed for three years. She says her diagnosis in 2008 awakened her appreciation for life. Today she’s walking again and encouraging others with rare, chronic illnesses to fight with faith.

Theresa Curry As communications manager for The Myositis Association (TMA), Theresa Curry writes and edits many of TMA's website and print resources. She has an interest in the field of autoimmunity as her sister died from a lifelong struggle with an unspecified autoimmune disease.

Kathleen Darrell Kathleen Darrell is a first-grade teacher in New Mexico. Diagnosed with idiopathic pulmonary fibrosis and pulmonary hypertension in 2008, she hopes one day to spearhead a support group for patients and caregivers in the Four Corners region.

Javier Estevez Javier Estevez is a retired New York City police officer. Following the 9/11 attacks on the World Trade Center in 2001, Estevez took part in search and rescue operations at Ground Zero. Two years later he was diagnosed with sarcoidosis and in 2011 he was diagnosed with pulmonary hypertension.

Omar Estevez Omar Estevez shares the same conditions as his twin brother, Javier. In 2005 he was diagnosed with sarcoidosis and two years ago was diagnosed with pulmonary hypertension. Estevez works in maintenance at the federal courthouses in New York City.

caringvoice.org • Spring 2015 • In Your Words

Suzanne Hemphill An accomplished motion and design graphics specialist, Suzanne Hemphill owns MaD Studio in Chattanooga, Tenn. Hemphill has lived with nephrotic syndrome for 37 years. As a board member of the Kidney Foundation of the Greater Chattanooga Area she strives to educate others about kidney disease.

Robert Mayfield, M.D. Robert E. Mayfield, M.D. specializes in family medicine and maintained an active practice for 15 years. He served as a first-line provider with a focus on disease prevention. Mayfield joined the CVC team in 2015 and oversees the Department of Medical Affairs and Compliance.

Gerald Salen, M.D. An expert on cerebrotendinous xanthomatosis (CTX), Gerald Salen, M.D. is a gastroenterologist at Rutgers New Jersey Medical School in Newark. Salen received his medical degree from Jefferson Medical College in Philadelphia, Pa., and has been in practice for 53 years.

John Wolf John Wolf ’s daughter, Ashley, was diagnosed with cerebrotendinous xanthomatosis (CTX) in 2004. Since then, Wolf has become a leading CTX patient advocate. He serves on the board of directors for the United Leukodystrophy Foundation (ULF).

Community Editor’s Letter Robin Lawson

Stories are powerful. They can motivate, influence, delight, and invigorate. Simply put, they can move you.

As Community magazine’s new publishing editor I’m naturally excited about the focus of this issue: your words. It was a privilege to interview patients, caregivers, and advocates and gather their words and compile their stories. And, it’s a pleasure to share them here with you, our readers.

Through the stories of those dealing with chronic illnesses, I found myself inspired and encouraged by their optimism and will. I found myself cheering them on. In turn, I found myself wanting to adopt their way of thinking, their one-day-at-a-time strides, and their faith that even the not-so-good moments in life have purpose. Their stories are packed with meaning. They moved me, sometimes to tears.

There are extraordinary rewards to sharing your story. It can be a magnificent means to inner growth and healing. It can resonate with others in such a way that they, too, benefit from your experiences. Stories remind us that we’re not alone in our struggles over adversity and pain, in our desires for happiness and fulfillment, in our quest for knowledge and understanding. Take note, stories have the potential to evoke change.

At Caring Voice Coalition we strive to provide the emotional and educational support you need and deserve. Often times it’s delivered through informative articles that offer personal insight. Throughout these pages you’ll find heartfelt profiles that impart courage, optimism, faith, and advice. We celebrate their stories and hope that as you read you’ll connect and learn and be inspired. Remember, your journey is important. Your story matters.

“The one thing that you have that nobody else has is you: your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can.” —Neil Gaiman 5

Vice President’s Letter Samantha Harris Often times, people take their life’s story for granted; they think their experiences aren’t extraordinary or worth sharing. The truth is, you don’t have to do extraordinary things to make a difference. A word of encouragement, a positive attitude, or an act of perseverance can have far-reaching and profound effects on others.

When I read the stories featured in this issue I was amazed by the common threads of appreciation, optimism, and resilience from caregivers and patients faced with chronic illnesses. Instead of falling in despair, they are embracing each day with fervor. How do they do it? As caregiver Larry Harris said, “Things that you think you could never have coped with before, once they’re presented to you it’s almost like you’re forced to take it to another level that you didn’t even know existed.” That’s true for all.

When you live with daily struggles, like a chronic illness, obstacles can become the norm and it’s easy to lose sight of your strengths. But it’s the small triumphs, the will to never give up, and the moments of unwavering hope in your life that speak volumes. By sharing your story, you empower yourself and inspire others. By actively listening to the stories of others, you’re able to view similar situations from a different perspective. It’s a way to learn and heal. We hope this issue not only educates, but encourages you to reach out and join a support group, whether it’s online or in person, and start engaging. We hope you will find comfort in knowing you’re not alone.

caringvoice.org • Spring 2015 • In Your Words

CVC COMMUNITY

We’d like to hear from you! Email your feedback and questions to: magazine@caringvoice.org I look forward to reading Community magazine every quarter and love the articles about people helping people within the CVC community. I particularly enjoyed the article written by Colleen Brunetti, "Defining the New Normal,” in the winter issue. As a caregiver, I can relate to Colleen's "new normal" and can't wait to read the next article in her four-part series. Thanks again CVC for providing valuable information for both patients and caregivers.

—— Scott Pettifer North Tustin, California CVC is awesome. On Dec. 18 I was diagnosed with pulmonary arterial hypertension (PAH) and was scared to death. The people at CVC are so kind and helpful. I’m thankful they can help me with such costly medications. They give me hope for a brighter future. I am blessed and so thankful!

—— Patti Smardz York, Pennsylvania Thank you CVC for the articles in the winter edition of Community magazine on "Traveling for Treatment". The story "A Place Like Home" has inspired us to help those in our area that need help with housing while they await their transplants. We are so grateful for those facilities across the country that can help patients and families that have to travel long distances, or are required to move close to transplant centers. This is such a difficult time for them and having a place to live with others with the same issues can be so supporting and comforting. Thank you CVC for the references to facilities in different areas, so patients can find places near them.

—— Kreg and Donna Thornton American Falls, Idaho

Readers’ Comments

Thank you all for all you do! I would be in sad shape without the assistance of CVC. Insurance changes are frustrating, but thanks to your efforts I will have medicine. You make my days brighter! My goal each day is to get out of bed, and each day I am able is a pleasant and welcome surprise. As those with progressive diseases know, change is the only thing guaranteed in life. I look forward to what each day will bring. Granted, some days are better than others, but we must all be thankful for what we have. I can't walk far, but I still have legs and am able to stand where many cannot. There are always those worse off than "we" are. My mother is an incredibly accomplished woman who just happened to be born deaf. She asked me one day, "What does a bird sound like?” How do you answer that question? She had never heard, but she imagined the sound and she is always happy to see and feed the birds. She never let being born deaf slow her down. There are some days when I am unable to physically do what I want to, or what I could do yesterday, but I try to focus on today. One day at a time has real meaning to those of us that know the brevity of life. Appreciate each day and each breath with a smile.

—— Milli Washock Melbourne, Florida The Disability Glossary in the winter issue was a great article! CVC did a wonderful job helping me get through the entire disability paperwork to a successful reward. Thank you for all your hard work.

—— Kathleen Young Georgetown, Delaware

CVC is the best team to work with. I truly appreciate all you do. You make things so easy for your patients.

I just want to thank you from the bottom of my heart. I don't know where I would be without your assistance with my specialty prescriptions and premiums for my medical insurance. I am forever thankful for CVC and its wonderful staff.

—— Tracy Schutt Colonial Heights, Virginia

—— Cheryl Kneal Orlando, Florida

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Subscribe to Community Magazine COMMUNITY Volume 2 • Issue 3 • Fall 2013 • The Quarterly Publication of Caring Voice Coalition, Inc.

Children

+ Creativity

The Art and Life of Paul Klee Alpha-1 Advocate Len Geiger’s Photography HDYO’s Creative Expression

Plus

Pediatric Lung Transplant Q & A—Thomas Spray, M.D. Children’s Health Insurance Program Pediatric Narcolepsy And More

CVC’s Community magazine, published four times a year, is packed with helpful information for patients, caregivers, and health care providers. Every issue features patient proﬁles, interviews with medical experts, information on support groups, and in-depth coverage of health care and legal topics that aﬀect those living with rare and chronic illnesses. Get a year of Community magazine—four quarterly issues—for only $10. Subscribe to Community online at: www.caringvoice.org/?p=4035 or send the completed form below with a check for $10 payable to Caring Voice Coalition: Community Magazine Subscriptions Caring Voice Coalition 8249 Meadowbridge Road Mechanicsville, VA 23116

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caringvoice.org • Spring 2015 • In Your Words

Close Up:

Heather Fortune CVC Case Manager

HERE’S NEVER BEEN A QUESTION

about what I wanted to do. Growing up I knew I wanted to help others. I currently live in Chesterfield, VA with my husband, Michael and son, Hayden. I’ve lived in the Richmond area my entire life. Before joining Caring Voice Coalition (CVC) in October 2014, during my last semester of undergraduate studies at Old Dominion University, I did an internship with the Children’s Hospital of Richmond at Virginia Commonwealth University. I was on the transitional care unit doing clinical social work. It was a great learning experience, and I felt it brought me full-circle. My older brother, Erik, lived on that unit for six years, so it was great to be able to come back around and be on the other side helping patients. Erik was born at 25 weeks gestation and due to complications at birth he couldn’t walk or talk. He had special needs. He lived at home with us until he was 14 years old, so I grew up with nurses who were like family. Growing up I learned how to do breathing treatments and G-Tube feedings. I could do those things at a young age. Working with my brother and his therapists at school were integrated into my education as early as kindergarten. To me, it was a normal life, but to others it’s unique. I have a bachelor’s degree in human services with a minor in psychology. I always knew I wanted to help others, but I was not sure exactly how I could do so. When I found human services it made sense. I thought, “This is it. This is what I want to do.” It’s helping others. When I came across CVC, I thought it was wonderful. My family has been affected by chronic illnesses. Within a four-year span my mother was diagnosed with Marfan’s syndrome (a genetic disorder that affects connective tissue), then leukemia, and then lupus. She passed away in 2012. My younger brother Zach was also diagnosed with Marfan’s syndrome during that time.

My mother was a nurse and a huge advocate of quality of life and palliative care. She would tell me, “Heather, it’s about the quality of life, not quantity.” I didn’t understand that when I was younger, not even when my older brother died. It clicked more so when my mother battled her illnesses. She worked so hard. It started making sense to me what she had been telling me all those years. I understood. And I’m appreciative for that lesson. So, I understand as a family member how difficult these situations can be, and how hard it can be to talk about things you don’t really want to talk about. I want CVC patients to know they can talk to us. I love it here. I’m part of a team that helps. A big thing for me is being able to take a little bit of the stress off our patients’ shoulders. The last thing they need to worry about is how they’re going to pay for the medications they need. The basis of my inspiration has always been my brother Erik, but I’ve come to realize that a large part of that is my mother. I realize now how much she molded me into the woman I’ve become, and I now see her same personality traits in my younger brother Zach, who lives with the same condition she did. She always took the time to explain things. She was always helping. Now, I want to help. I want to give back. So much has been given to me over the years, now I want to help someone else.

“Its about the quality of life, not quantity.” Patients should know that everyone here at CVC has huge hearts, loves what they do, and enjoys coming in to work knowing that they’re going to help someone each day. The support here is amazing. Everyone has a passion for the part they play in CVC’s goals and mission to improve the lives of those we serve. I’m really grateful to be here and have the opportunity to work with our patients every day. I can’t imagine doing anything else. 9

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caringvoice.org • Spring 2015 • In Your Words

NEWSMAKER Gerald Salen, M.D., internist and gastroenterologist, Department of Medicine, Rutgers New Jersey Medical School

Community recently spoke with Gerald Salen, M.D., internist and gastroenterologist at Rutgers New Jersey School's Department of Medicine, about the cause, symptoms, and treatment for cerebrotendinous xanthomatosis (CTX). What is CTX?

The first challenge is the name: Cerebrotendinous xanthomatosis. We call it CTX for short. It’s rare. There are only about 200 people in the U.S. that I'm aware of with this condition, but there are probably more. It's recessively inherited; it requires two bad copies of the same gene, one inherited from the mother and one inherited from the father. The underlying defect is abnormal bile acid synthesis. In our liver we make two primary bile acids from cholesterol, one is called cholic acid and the other is called chenodeoxycholic acid. We make these bile acids daily; they facilitate the digestion of fat. In CTX there is a block in bile acid synthesis. Chenodeoxycholic acid becomes deficient and this is what leads to the disease. Since a person with CTX cannot make chenodeoxycholic acid, their body produces precursors, which we call bile alcohols. It also produces a chemical called cholestanol. Over time, cholestanol builds up and forms deposits on the brain, tendons, eyes and other tissues.

What are the signs and symptoms of CTX?

It's important to recognize that the symptoms mainly affect the loss of brain function causing dementia, mental retardation, behavioral and psychiatric problems, cerebellar ataxia, pyramidal tract paralysis, peripheral neuropathy, and epileptic seizures. As the disease blossoms over the years, it leads to a lot of impaired neurologic function. But, in addition to that, cholestanol deposits in the cornea of the eye and cause juvenile cataracts, which is an early sign of the disease. And, a xanthoma (a rare growth containing cholesterol) can develop under the skin or along tendons. CTX patients can also develop premature osteoporosis, kidney stones and gallstones. Children with this condition often show unexplained, chronic diarrhea. Like all diseases where there’s too much cholesterol, premature atherosclerosis and heart attacks can develop as well. What are the fi rst steps in identifying CTX?

A child usually begins to show signs of neurological deficiency, perhaps a problem in school, or they may have unexplained juvenile cataracts. We also look for a xanthoma; usually as a teenager the patient would have unexplained swelling of the tendons. A xanthoma usually develops in patients with high levels of cholesterol in the blood, but CTX patients have lower than normal cholesterol, so having this

disparity between the xanthoma and the low cholesterol should be a warning sign. In addition, elevated cholestanol levels in the blood, elevated cholestanol levels in the bile, and the presence of bile alcohols in the urine are all chemical findings of abnormal bile acid metabolism that underlie CTX. Who should be tested?

I think that all children with unexplained diarrhea, juvenile cataracts with no apparent cause, and unexplained neurologic conditions should be tested for CTX. What does testing entail?

A blood test confirmation with a urine test. The classic test is the finding of increased amounts of cholestanol in the blood. The elevation confirms the diagnosis of CTX. The diagnosis can also be confirmed by doing genetic testing. How important is early diagnosis?

If the diagnosis can be made early, before the more devastating neurological symptoms develop, treatment can prevent additional damage and lead to a normal and effective life. What is the treatment?

If we begin to treat patients with chenodeoxycholic acid (this is now an FDA approved drug), given in a sufficiently high concentration it can shut down all the abnormal bile acid synthesis in the liver. The treatment is not a foreign chemical in the body; 11

SYMPTOMS OF CTX In infancy: »» Diarrhea »» Cataracts »» Psychomotor retardation »» Pyramidal/cerebellar signs (pyramidal and cerebellar are parts of the brain/central nervous system)

In adulthood: »» Neurologic dysfunction with variable time of onset Diagnosis of CTX can be confirmed with a biochemical analysis of the blood and urine. Genetic testing can also be performed. Photo by National Eye Institute (NEI)

we’re replacing what should be there. When that happens, the abnormal chemical levels fall and the level of bile alcohols in the urine diminish, and there’s improvement in neurological function. This is a very important part. The treatment stabilizes the disease in two ways: it prevents further neurological damage and at the same time the body attempts to excrete the extra, accumulated cholestanol, and there’s an improvement in nerve function and the quality of life improves in the patient. That is the key point. Often times with inherited diseases there really isn't any treatment and people continue to deteriorate. CTX is unlike that in terms of treatment. We have a good treatment and patients who have been treated have gone on to live a normal life. What is your involvement with CTX research and testing?

Although I’m a trained gastroenterologist, I participated in a special fellowship at The Rockefeller University in 1970 that allowed me to investigate 12 2

CTX patients and discover the absence of chenodeoxycholic acid and be able to treat them effectively. I’ve had 30 years experience treating CTX patients and have treated about 100 patients now. There was a scientist by the name of John Menkes who first discovered that there was increased cholestanol in the brain of CTX patients, but I discovered that not only was the cholestanol distributed in the brain, but in all tissues of the body. And, most importantly, that this was due to abnormal bile acid synthesis. I then made the next important discovery that I could replace that chenodeoxycholic acid by feeding the patient a sufficiently large dose that would shut down abnormal bile acid metabolism. I followed up with Dr. Menkes and proved that we could use cholestanol measurements in the blood as a diagnostic test for CTX. Although it’s a devastating disease if untreated, one of the important points about CTX is that there is a very good and effective treatment.

caringvoice.org caringvoice.org •• Spring Summer 2015 2013, • InThe YourHealthy Words Eating Issue

»» Mental retardation leading to dementia »» Psychiatric symptoms (including behavioral changes, hallucinations, agitation, aggression, depression, suicide attempts) »» Cataracts »» Paleness in a particular part of the eye »» Premature retinal aging »» Xanthomas (skin lesions characterized by accumulation of lipid-laden cells) »» Premature arteriosclerosis »» Coronary artery diseases »» Chronic intractable diarrhea »» Gallstones »» Osteoporosis »» Increased risk of bone fracture »» Epileptic seizures (EEG abnormalities) Source: United Leukodystrophy Foundation (ULF) www.ulf.org

In Your Words:

Breaking Barriers John Wolf became a leading advocate for CTX patients after his daughter was diagnosed with the rare disease.

ack when my daughter, Ashley, was diagnosed with cerebrotendinous xanthomatosis (CTX) in 2004 I quickly became aware of how rare this disease is. I immediately started researching CTX and started seeing doctors’ names coming up, but I really wanted to get in touch with patients or caregivers. It took six months of searching before I finally found a small support group. I still remember how scared and alone we felt; we couldn’t find anyone else that was dealing with this. I don’t want anyone else to feel that way. I want to help as many people as possible. Since the early symptoms of CTX appear rather benign, manageable conditions with the more severe symptoms occurring later in childhood to early adulthood, it’s easy to misdiagnose. That, combined with how rare it is, it’s easy to see how it can be missed. Ashley had chronic diarrhea from birth, she struggled in school, had problems with learning and memorization, juvenile cataracts, and low weight. As she transitioned from infant to toddler and ate solid foods, the diarrhea became very apparent; that is when we started taking her to doctors to try and find out what was going on. Her pediatrician assured us that she would grow out of it, and we accepted that for some time. She was ultimately diagnosed with irritable bowel syndrome (IBS) and prescribed antidiarrheal medication, which worked for a period of time but eventually stopped being effective. About a year later, when Ashley was 10 years old, she developed cataracts and the true diagnosis was discovered. We had never heard of CTX before. In my opinion the ophthalmologist saved her life. I suggest other patients and caregivers of patients learn as much as possible about the disorder. Never give up, be persistent, and always ask questions. Make sure your doctor is providing the best care or is referring you to the best care possible. Know that you are not alone in your experience with the disease, and that the treatment is effective. Insist that a specialist who is educated about CTX conduct ongoing care. With continued treatment, children with CTX can go on to

live a normal life. The medication is a lifelong treatment so it is imperative that patients develop an independent habit of taking it properly, as early as possible, or that someone is appointed to ensure that this occurs. The medication replaces a bile acid in CTX patients that their liver doesn’t make. In talking with other patients I realized early on that they had all experienced medical barriers in terms of treatment. That was the catalyst for me to put my foot into the advocacy space and start knocking on doors, sending emails and trying to figure out how we could establish a regular supply of this medication, not only for my daughter, but for everyone else that is currently diagnosed and those who are surely to come. That is how I got involved with the United Leukodystrophy Foundation (ULF). I’ve been on the board about nine years. Ashley has been a rock star through all of this. She’s been inconvenienced with surgeries, and tests, and long stays in research labs and rightly makes the observation that it’s not fair and asks the “why me?” questions, but she hasn’t let her experiences diminish her outlook on life. By all measures, Ashley is doing great now. She turned 21 in February and I am happy to say 11 years after diagnosis, that if you were to sit and have a conversation with her, you’d never know that this horrible disease has affected her. Awareness and early detection is imperative. The sooner one can start treatment, the sooner the body chemistry can be normalized and the sooner symptoms can be prevented from developing. Ashley is a poster child for the effectiveness of the medicine. We’re very lucky that she’s still healthy. When you look at the CTX patient population in the U.S. it’s very small, but there are people we don’t know about who are flying under the radar without a diagnosis. I’m confident that because of the neurological effects, a person can become severely disabled with this disease if left untreated. Huge strides have been made to provide a standard of care for patients. But, I feel like there are a ton of other things that still need to be done: treatment protocols, research, and newborn screenings, which is going to be the next best thing to a cure if you can get someone started on treatment at birth. I don’t think there’s any better answer than genetic therapy; I would really like to see that happen. We’re currently seeing strides in that area with other leukodystrophies, so I see it as a realistic possibility, but until then we’ve got to get these stopgap measures in place. I’m inspired by the amazing individuals who have cared enough to listen to me, who have cared enough to invest huge sums of money, time, and effort to advocate for patients of CTX. They continue to work tirelessly to improve diagnosis, treatment, and care, and share the same passion that I do to help, despite the very low patient population. I don’t feel like my work is done, though, in what I can do to be an advocate. There’s still much more to be done from an awareness and diagnostic perspective. Pictured: John Wolf with his daughter, Ashley, and son, Jacob. Ashley was diagnosed with CTX when she was 10. Jacob did not inherit the disease. Learn more about their story, and CTX, at www.ctxinfo.org.

Deﬁning The New Normal:

The Power of Your Words

This column is the second of a four-part series by Colleen Brunetti, M.Ed., C.H.C., based on Brunetti’s book, ‘Deﬁning The New Normal: A Guide to Becoming More Than Your Diagnosis’

ANY YEARS AGO, PERHAPS BEFORE I was really even comfortable with sharing my story of life with Pulmonary Hypertension (PH), I found myself being pushed out of my comfort zone and encouraged to do just that – talk about my journey with PH. At first, I was quite taken aback. Any talk about my journey was centered on sharing my alarm at the diagnosis, expressing my confusion over medications, and grappling with a fear of the future. I was looking for answers, not offering them. Why was I being asked to share my story? However, as time progressed, and I started to learn how to live with PH, I began to also learn that sharing my story had great power. I learned this by first seeing the power that other people’s stories had on me. I looked around and saw someone who used to be limited by his or her disease and now was doing better – could I feel better too? And then there was someone who learned to cope with a limitation I struggled with – could I be coping better too? And perhaps most mind-blowing to me, there was someone who had not only regained mobility but was actually exercising – could I start exercising again too? The answer to all of these questions was eventually, “Yes”. And as that became clearer, something began to shift. I have come to realize there are actually three distinct groups of people you are reaching when you are sharing your own story, and each has a reciprocal benefit. These three audiences create a cycle that repeats itself as you make progress, face new challenges, and help those along. You may also find yourself moving between one group and the next yourself as you listen to others tell their story. 14

caringvoice.org • Spring 2015 • In Your Words

Steps Through a Support Cycle: The People You Impact Those who are a step behind you:

You are living with a critical illness, or caring for someone who is. Chances are, you’ve learned a thing or two about coping and moving forward. When you share your story, those who are a step behind where you are now can look to you for guidance and inspiration. If you have to be put in this crazy hard world of critical illness, what a blessing it is to turn that around and use it for good, and for helping others. Do it whenever you can.

Those who are stepping beside you:

These are the people who are living stories with strong parallels to yours. They are the ones who “get it”. In a broad sense, this may be anyone sharing life with the same disease you are. However, there are always subgroups in these categories too, such as those who are in the same stage of life as you are, or those who are on the exact same medication, etc. It is these people who you can look to and say, “Me too! Let’s do this together.” There is something immensely comforting about that.

Those who are a step ahead of you:

These are the veterans, the movers and shakers, the “been there, done that, got the T-shirt” crowd. They’re the ones who have blazed the trail on new medications, found ways to cope with limitations, or blasted through walls you are stuck trying to figure out how to get around. These are the folks who, when you tell your story, look back and lend you

a hand up. When you rely on those who are a step ahead of you, you not only benefit from their wisdom, but you help them solidify their own strength. Pretty cool, right?

find one? Start one. Chances are, someone else is out there looking too. Blogging or journaling can also be immensely helpful. There is something very therapeutic about writing down your experiences and the thoughts and emotions that come with them. If you choose a public blog, and really keep it No matter where you are in your own journey with a major up, be ready for outcomes you weren’t expecting! I have diagnosis, someone needs to hear from you. What counts been blogging for a few years now and every once in a while is that you are sharing your story, and listening keenly to someone will contact me and tell me my blog gave them others tell theirs, so that there is always an exchange of hope as they lay in a hospital bed reeling from a diagnosis, or information, support, and inspiration. were up in the middle of the night searching the Internet for While it’s pretty clear that sharing your story can have im- answers. When you throw your story out to the world, you mense impact, sometimes it can be challenging to find the never quite know the amazing ways it can come back to you! right platform. Start small, with support groups of people For me, sharing my story took a sort of unexpected and you trust, for example. Attend meetings, get to know one massive turn when I wrote my book, “Defining the New another, and watch as the cycle of sharing and supporting Normal: A Guide to Becoming More Than Your Diagnosis”. turns. In this book, I use pieces of my story as a jumping off point Social media is also a great place to start. Not only is it to tackle every aspect of life I could think of when living with available 24/7, it is also accessible when getting out and a major diagnosis. I also combined it with my professional about isn’t quite so easy. There are groups on Facebook, for training as an Integrative Nutrition Health Coach. So it is one example, for just about any topic you can dream up. Can’t part “How I did it” and one part “How you can too”. It is the go-to guide for thriving, no matter what the medical charts say. The exciting thing for me about this experience is that for the first time I was able to take my story beyond the PH community. I very purposefully wrote the book for anyone facing a life changing diagnosis – be it rare disease, d by e autoimmune, cancer, and so on. And t c pa there is no way I could have done this successfully without observing the cycle of support that happens in other disease communities, and listening to the stories of so many people, many of whom make an appearance in the book as well. The truth is, it doesn’t matter if you’re curled up in bed with a journal and a pen, publishing a book, talking to a small support group, or addressing an audience of 1,000. What matters is that you share what you know. It helps you cope, it helps others cope, and it is at the heart of www.definingthenewnormal.com what drives us forward together.

Crafting Your Words

Those who are

a step behind

a re

te impac d by

Your Story

a re

a step ahead

are impac t

Those who are

a step beside

In conjunction with my book, I am running a little project called #iDefine. Send me a picture of you defining your new normal with a diagnosis and tell me a little about it. Whether it is finding something new to do that you love, or getting back to something you thought you could no longer do at diagnosis, show me in a photo how your story defines the journey for you. I’ll put it up on my website in a slideshow and help you take a step to sharing your story with the world. E-mail pictures and photos to: Coach@ColleenBrunetti.com and put #iDefine in the subject line. I look forward to hearing from you! For more information on Colleen’s book, visit www.definingthenewnormal.com

In Your Words:

Brothers In Arms

Javier’s Story

’M A RETIRED NEW YORK CITY POLICE only able to walk two minutes at a slow pace. I have the hobby officer. The sarcoidosis came from inhaling the debris of metal detecting, walking around the beach to give myself from the 9/11 attacks. I was there about two days after some exercise, and I can’t do that anymore. Traveling now, vathe twin towers fell. At first I did perimeter security around cation-wise with my family, is also difficult. My daughters are the buildings, then they had me doing search-and-rescue. still young, they’re 14 and 15 and they want to participate in Eventually we began to tackle digging through the rubble things like zip lines and go on rides, but I can’t do that. And, for remains. I worked there about four to five months. when we take long flights I’ve got to think about the oxygen One day a sergeant asked me to get masks for the entire tanks that I must bring on board. team of 10-12 guys but the Occupational Safety and Health It’s tough, but I have my family’s support. They help Administration (OSHA) group had run out of them. In the me cope. I’m able to attend church and I do research on meantime they wanted us to use a handkerchief or our sleeve the computer; I enjoy reading articles. Most of all, I enjoy to cover our noses and mouths while we were working. spending time with my family. They got new masks after a while but they were paper-thin You have to stay strong, positive, and not give up. If and when and only good for short periods because the air penetrated you get diagnosed, look for a second opinion. Most importantly, through and then you were right back to having the dust don’t give up on your life. Just because you were diagnosed with inside your nose and mouth and down your throat. an illness doesn’t mean you should get depressed and lay about. My first symptom was shortness of breath. I have two It means you need to remain strong, remain active, and pursue daughters, who were young at that time, and one day they whatever you want to do with your life. Don’t think that it’s were asking me to chase them. We were playing tag and over because there is medication that could very well help. as I tried to catch one of them I fell. I couldn’t “Our illnesses are very misunderstood. breathe. I reported the next day to work and saw the police department’s doctor. I told her how I They mimic a lot of different things so it’s was feeling and she sent me to a pulmonologist. important that a proper diagnosis is made.” I saw that pulmonologist for six years. He would prescribe medicine and tell me there’s a real problem, To have my twin brother, who has the same conditions, but he would never tell me the problem. Finally, I went to a understand what we’re going through and understand the pain, different pulmonologist. I told him my conditions and how is awesome. Our illnesses are very misunderstood. They mimic I was feeling and he did about 2 ½ hours-worth of work a lot of different things so it’s important that a proper diagnosis during that first visit. He said I wouldn’t be able to return to is made. The sooner you get checked out and diagnosed the work because I was so sick. better the prognosis later down the line. In 2007 my current pulmonologist told me I would need a It’s very important to share your story with others because lung transplant. He said not right away, but in due time. I’m people like myself, who are closed off, need to know that there still trying to get on the waiting list. I’ve started the process are individuals with similar conditions who understand. but there are a battery of tests and insurance regulations that Most importantly, don’t dwell on the illness. Enjoy your life I’m still working through. to the fullest extent because tomorrow is not a guarantee. I give In 2011 I was diagnosed with pulmonary hypertension. I’m that advice to enjoy life because I was told once I only had a not able to do much of what I used to do — I can’t walk without limited amount of time, maybe at most three years, and those an oxygen tank, and even with the oxygen tank it’s limited. I three years have already gone by. just did a six-minute walk test and I failed that miserably. I was By remaining positive you will see a change in yourself. 16

caringvoice.org • Spring 2015 • In Your Words

Twin brothers Javier and Omar Estevez have been living with sarcoidosis for more than a decade. Within the past four years, they’ve also been diagnosed with pulmonary hypertension. They find strength and support in one another, and urge others with chronic illnesses to keep fighting with hope.

Omar’s Story

WORKED MAYBE THREE OR FOUR BLOCKS away from the World Trade Center and several years after the 9/11 attacks I was having a lot of problems with shortness of breath when I was walking home from work. I couldn’t walk without coughing. I went to my family doctor and he sent me to a pulmonologist. About a month later test results confirmed the sarcoidosis. I work in maintenance at the federal courthouse, primarily doing heating, ventilation, and air conditioning. Every night I would see trucks from the sanitation department cleaning all kinds of residue from the street and I would see all of this white powder come up. One day I asked about it and was told it was debris from the buildings, and it may contain asbestos. They thought that with the facemasks the air was ok to breathe, but it turned out that it wasn’t. When I went to the pulmonologist they took an x-ray and said that a lot of the sacs inside of my lungs, which are supposed to work like a sponge, have debris and dust all over them; they’re not working to full capacity. Later on, it started hurting my lungs a great deal, and it even started hurting my heart. The doctor explained that it’s due to a lack of oxygen. A right heart catheterization confirmed the pulmonary hypertension (PH). The doctor told me that this has probably been developing for some time. The PH is all due to the sarcoidosis. Simple tasks, like climbing a flight of stairs, are daily challenges now. I’m still working, but last year alone I took around 30 sick days. The cold weather in New York hurts my lungs. It’s like squeezing an orange. Sometimes I have no other choice but to stay home from work because when I step outside it feels like the cold air freezes my lungs. I have a lot of problems breathing, even though I have medication. My wife helps me; she’s been my rock. And of course I take my medication and I pray. I read Scripture to help me get through the day because for me, going through the day, mostly at work more than anything else, is very tough. I feel that a lot of people don’t understand these illnesses. They see you going about and they think what’s that person walking around with that machine for? But they don’t know

how we actually feel inside. People don’t realize how my lungs burn so much in the cold weather, and just to stop outside and hold onto a railing makes it worse. I would like others with chronic illnesses to know that they’re not alone; that there’s hope. CVC, they give you hope. In many ways CVC is the spokesperson for us, they go out there and fight for us. Sometimes when we have a certain problem or condition, you’re afraid to talk about it because you feel like you’re at the point where you feel like nobody’s there to help you. With CVC, I know I’m not the only one with this fight.

Omar and Javier Estevez celebrating Christmas in 2014

My illnesses have taught me that life is short and every day is a challenge, but you have to find a balance, have hope, and have positive friends and family. That will help you greatly. My wife says you have to find something in life that you love doing, like a passion, that will help you get your mind off your illness. I love fishing and traveling, that’s my passion. If I had money I would travel the world. My twin brother and I are very close. It’s hard to believe we have the same illnesses, but I can relate to him more. We try to help each other and be a support system for each other. Patients should follow their doctor’s orders and take life one day at a time. The most important thing is to enjoy life. To cope with my symptoms I often use rest, laughter, and medication. My hope is that down the road, with new technology and more scientific data, and new medicines, all of us with this illness will someday be able to have a longer life. 17

Patient Association Proﬁle Theresa Curry, Outlook Editor, Communications Manager The Myositis Association (TMA)

How long has The Myositis Association been in existence? Who does the association serve and what services does it offer? The Myositis Association (TMA) was started in 1993 by Betty Curry, who was herself diagnosed with inclusionbody myositis and saw a need for education and support. TMA serves its members by providing education and support, and funding research into better treatments and ultimately a cure. What are some of the things you do for The Myositis Association? How and why did you become involved? I am the communications manager and write and edit many of TMA’s website and print resources. I also schedule our live discussion series with myositis experts, maintain social media, plan the conference content and refer members to appropriate resources as needed. I was actually recruited by the founder, Betty Curry. I was a health and features reporter working for a daily newspaper when she asked me to consider writing the quarterly newsletter and website content for her young organization. I was interested in the field of autoimmunity as my sister had just died from a lifelong struggle with an unspecified autoimmune disease. What are some of the services that you feel are most needed among myositis families and patients? Better diagnoses. Myositis patients are not alone among people with autoimmune disease in struggling for weeks, months and even years to get a correct diagnosis. Early diagnosis is crucial, even life-saving. People who are treated early on have a much better outcome generally. By the same token, people who are given powerful drugs that do no good in their particular case are harmed. We work constantly to educate physicians. We’ve had great success with a new program where myositis experts visit young health professionals. We’ve even recently had a board member with myositis volunteer for teaching rounds at a medical school.

caringvoice.org • Spring 2015 • In Your Words

Better treatments. The drugs presently available have many alarming side effects, and one form of myositis does not have any known treatment. We’re proud of our research program that funds fellowships for young doctors and grants for established researchers. In the last 12 years, TMA has funded 37 research projects directly related to myositis, for a total of $5 million. This year, several bequests have allowed us to increase our research funding. Better information. This is an exciting time for autoimmune diseases, as we’re finding out more and more about environmental factors and lifestyle effects. For instance, as recently as 10 years ago, myositis patients were advised not to exercise, to avoid stress on already weakened muscles. In the last several years, researchers have found that exercise not only strengthens inflamed muscles but also has a systemic effect on inflammation. We take our role of keeping members up to date very seriously. What do you think are the most important things for the newly diagnosed and their families to know? Getting support from veteran myositis patients and good referrals to established myositis experts: both are of crucial importance that can greatly influence the course of the disease. We try to connect the newly diagnosed with both of these resources. We also provide as much information as we can on our website at www.myositis.org; in the hope that the newly diagnosed will begin with some knowledge of the disease. What do you think the biggest challenges are for myositis patients and their families? One of the biggest challenges for the patients we see is the sense of isolation. Not only are they going to physicians who may never have seen a case of myositis, but most likely they have never met another person with the same disease. We have accomplished a lot with our support groups and provide many other ways for patients to be in touch with each other and share knowledge - through social media, through our website forums, and through our Annual Patient Conference, which will be in Orlando Sept. 10 to 13 this year.

Do you refer patients to clinical trials? We let our members know about clinical trials as soon as we know about them. Typically, researchers will come to us when they want to find myositis patients for potential studies. What is most important for people to know about inflammatory myopathies? I think the most important thing for the general public to know about all rare diseases is that collectively they take a huge toll in productivity and health care costs. The National Organization for Rare Disorders estimates that one in 10 Americans has a rare disease. We need to support research into these diseases and recognize those who struggle with them.

MYOSITIS Myositis refers to inflammation of the muscles. It can be caused by injury, infection, or autoimmune disease. The three main types of chronic, inflammatory myopathy are polymyositis, dermatomyositis, and inclusion body myositis. Symptoms of myositis may include: •

Muscle weakness

•

Fatigue after walking or standing

•

Tripping or falling

•

Trouble swallowing or breathing

Doctors may use a physical exam, lab tests, imaging tests and a muscle biopsy to diagnose myositis. The chronic inflammatory myopathies cannot be cured in most adults but many of the symptoms can be treated. Options include medication, physical therapy, exercise, heat therapy, orthotics and assistive devices, and rest. Polymyositis and dermatomyositis are first treated with high doses of corticosteroid drug. Source: National Institute of Neurological Disorders and Stroke

Finding support for myositis You will do better if you find a community that understands and supports you. The Myositis Association (TMA) provides many options for support. Those with myositis face the difficulty dealing with a chronic illness, plus the extra challenge of having a rare disease. Because the disease is so rare, it’s hard to find others who understand what you are going through and the challenges posed by myositis. TMA helps resolve this problem through its Keep In Touch (KIT) member support network. KIT groups offer members the chance to join with others in their area and share mutual support, friendship and ideas. TMA members often post remarks on the Community Forum about physicians they find especially helpful, coping strategies, or side effects experienced from particular medications. There is a Forum for each type of disease as well as a general Forum at TMA’s website. Alternatively, TMA has an Ambassador program available for new members which is less formal than participating in a support group but gives new members the opportunity to speak with another member of TMA who has myositis and might be able to share some insights with you. To speak with one of TMA’s ambassadors, either email TMA@myositis.org or call 1-800-821-7356. Source: The Myositis Association

Contact TMA:

The Myositis Association 1737 King Street Ste 600 Alexandria, VA 22314 www.myositis.org

In Your Words:

A Walking

Miracle Linda Carter describes how myositis awakened her appreciation for life

WANT TO DO ANYTHING I can to help somebody know that there’s always a light at the end of the tunnel. I have polymyositis and dermatomyositis. I was diagnosed May 8, 2008 by accident. I never knew I had it. It’s not a common illness. I was at work one day — I was in corporate America so I didn’t do any heavy lifting or anything like that — and I was just feeling a little fatigued. I went to lunch with a colleague of mine and I still wasn’t feeling that well, so I went and saw my doctor that evening after I got off work. When I went to sign in, I dropped the papers on the floor and as I squatted down to pick them up, that’s when it happened. I couldn’t get up. My body deflated. I had no muscles whatsoever. I had no idea what was going on. When I went to the hospital none of the emergency physicians knew what was going on with me, except for one great doctor who just happened to be coming by, and he immediately diagnosed me with polymyositis. It’s so rare no one knew what it was. Prior to that I was very active. I was working out, I was eating right, I was feeling no pain, and it just happened. I don’t know why. To my understanding, it happens to 1 out of every 100,000 people and I happened to be that one. It can happen to children, and it happens more in the African American heritage. It’s just not well known. I don’t wish it upon anyone, especially a child. 20

I ended up losing mobility. I became paralyzed for three years. I was back in a fetal position. As I was losing my mobility, and I became totally disabled, my family cared for me. I was in the hospital for a while, and they wanted to send me to a nursing home, but my family totally refused it; they took care of me. My mom, Maria Carter, my daughter, Mone’t Murray, and my sister, Mindy Carter took care of me 100% — bathing, changing, and feeding me. They did everything. But, I still had my wits about me. My brain didn’t shut down, so I knew everything that was going on. I’m so blessed to have had them in my life. After year three of me being disabled, I was sleeping downstairs and one morning, I’ll never forget, it was in February around 2 a.m., and God spoke to me and said, “It’s time to sit up.” And I sat up. My daughter and my grandson were sleeping on the other couch in my den, and I called her name. She looked at me and screamed because I sat up by myself. This illness and any other illness, it doesn’t just affect the patient, it affects the families. The doctors told me, off the record, that I had defied all medical theory. This is God’s work. There’s no way I should be sitting up, there’s no way I should have any movement in my body because I was stagnant for three years. My muscles were nothing. But God told me to sit up and I sat up. I started

caringvoice.org • Spring 2015 • In Your Words

walking, and I’ve been walking ever since. No one can really explain why. My doctor best described it to me as a virus going through your body that has to take its course. Through it all, I never lost faith. I never was angry because I knew this was something that God planned for me, for the good. I’m a whole different person now. To be able to see the trees and smell the flowers outside; for three years I didn’t know what it looked like outside, other than going to the doctors. Before, I never appreciated the trees and the grass growing, and the flowers blooming, and the birds chirping. It was a true testimony. I still have symptoms. This will never leave me. But I know what to do. I learned to listen to my body. The best medicine for me is relaxation. I have to totally zone out and relax. Otherwise it could flare back up. I have a lot of problems going uphill. My upper thighs are the most damaged part of

Clockwise from top: Linda Carter’s mother, Maria Carter; her grandsons, Makai and Mykell; and her daughter, Mone’t Murray.

“This illness has taught me that life is precious. Don’t take anything for granted and listen to your body.”

my body, that’s why it’s so hard for me to walk on an incline. This illness makes the immune system attack your muscles. And it attacks in your core. So my entire core was gone. But each day I walk. Now I’ll get on the treadmill and I’ll walk a quarter of a mile. And each day I get stronger and stronger. If anyone looked at me they’d never know I was ill. That’s how great I’ve healed. But, it is a silent illness. It can flare up at any given time. You just have to learn to listen to your body and I’ve learned to do that for the past several years. I had to start over walking again, and I had to start over talking again, so I have to keep moving. I have to keep movement in my body. I’ll take a can of vegetables and just move my muscles in my arms, just to keep them strengthened, because at one time I couldn’t even lift my arms. I can’t be stagnant because that’s not helping me. I just have to keep moving. I have to exercise, but it has to be in moderation. I can’t over exert myself otherwise it will attack me again. So I have to listen to my body and everything has to be done in moderation. Every normal person’s creatine kinase (CK) level is 0-300. When I was diagnosed mine was 16,800. I didn’t realize it, but I was dying. I had no clue. I now have a regiment of medications that I have to take, but I’m truly blessed because God graced me once again to be able to tell my story and let everyone know that just because you’re ill, doesn’t mean that it stops your life. My doctor said it perfectly when he told me: “You’re not ill, your muscles are ill. Don’t let the illness take control of you, you control the illness.” I think about that every day. There are so many people with a silent illness. Some lose their faith and that’s the worst thing you can do. If you lose faith, you’re defeated. Another piece of advice that I tell people is that you have to fight. You want to live? You have to fight. You don’t want to be sick? You have to fight. Your mind is very powerful. You have to fight. I’m not going to let this get me. I’m just not. I didn’t, and I won’t. I think myositis can be misunderstood. If you were to see me you’d never know that I was ill. But, I have to think

about what I’m doing before I do it. A normal person will simply walk; I have to think about how I’m going to walk because I could fall at any minute. I have to think about everything that I do, while I’m doing it, but no one ever knows it because it looks like I’m doing it normally. I’m really not. I want people to be aware of the disease. It’s an illness that sneaks up on people. It’s an illness that should be talked about, because you might have it and not even know it. This illness has taught me that life is precious. Don’t take anything for granted and listen to your body. Everyone’s body talks to them, you just have to listen. If you’re feeling a little sharp pain in your leg, your arm, or your stomach, there’s a reason. If you’re feeling fatigued, or you’re lying in bed all day long because you overdid it, there’s a reason. You have to listen to your body. And when your body tells you to calm down — not shut down — but calm down, then calm down. I’ve learned that more than anything else. My advice is to keep faith and believe that there is a light at the end of the tunnel. There’s a way to defeat, or to maintain, the disease. And with the help of your doctor, do your research. You have to research. Daily life is a challenge, but each day I find myself getting stronger and stronger. I have no doubt in my mind that it’s going to get better and better, each and every day. My strongest support system is my family. Gradually my body is coming back to normal. I enjoy my two beautiful grandsons, Makai and Mykell. They’re my joy. I can’t always lift them up, but I can hold them. Before myositis, I took a lot of things for granted. I took life for granted. I took walking for granted. I took living for granted. I took outside for granted. I could have looked at life a little bit differently. I’m humbled now. I take nothing for granted anymore. Now I dance with joy because I wake up. I thank God every day for waking me up, seeing another day, taking another breath. I had an awakening. Life isn’t brand new, but it’s new. I’m a different person. I see things differently. I had my awakening and I’m good. I’m good. 21

In Your Words:

Having lived with nephrotic syndrome for 37 years, Suzanne Hemphill strives to educate others about kidney disease

HAVE BEEN LIVING WITH NEPHROTIC syndrome since 1977. I was 16 years old when I was diagnosed. I think I’m a bit of an unusual case because we detected it early, which doesn’t usually happen. At the time, I was in high school and a photographer on the yearbook staff. We had a deadline for the yearbook and I was up all night long on my feet developing pictures in the darkroom. When I got home that morning my legs were so swollen they looked like elephant legs. My mother took me to the doctor and they didn’t know what it was at first. I was put to bed for a whole week. Then they scheduled a biopsy for me at Emory University Hospital in Atlanta and that’s when I found out that I had kidney disease.

I never really let it affect me because steroids always worked. I’m blessed that I’m not on dialysis and I haven’t needed a transplant. After 35 years of being on and off steroids, though, my periods of remission started getting less and less. It got to the point where I was only in remission for a month and I would relapse right after I came off the steroid. It was just awful. I didn’t know what I was going to do. Fortunately, I’m on the board of the Kidney Foundation of the Greater Chattanooga Area in Tennessee and one of our board members is a nephrologist. I found out that the Southeast Renal Research Institute (SERRI) was doing a clinical trial on a test drug. With some great effort, on my second attempt, I got into the trial. I’ve been in remission

Nephrotic syndrome (NS) is not a disease itself, but rather a set of signs and symptoms that result from damage in the kidneys’ filtering units (glomeruli). Damaged glomeruli allow too much blood protein to leave the body, leading to nephrotic syndrome.

Symptoms may include: Causes: »» High levels of protein in urine »» Low blood protein »» Swelling

»» Less frequent urination

»» Weight gain from excess water »» High blood pressure

»» High blood cholesterol levels

Some of the diseases that cause NS occur only in the kidney. These include minimal change disease (MCD), focal segmental glomeruloscerosis (FSGS), and membrane nephropathy (MN). Sometimes, diseases that occur in other parts of the body can cause NS. These include diabetes, cancer, lupus, amyloidosis, and vasculitis.

Facts: »» NS is a common contributor of Chronic Kidney Disease (CKD) and responsible for 12% of kidney failure in adults and 20% in children. »» 3 out of every 100,000 adults are diagnosed with primary NS each year.

»» Males are more likely to be diagnosed with NS than females.

Source: NephCure Kidney International. For more information, visit nephcure.org.

caringvoice.org • Spring 2015 • In Your Words

now for almost 16 months, which is just stupendous. I feel better than I have in 15 years. They’re doing trials to learn more about the drug. They’re using it not just for kidney disease, but also for multiple sclerosis and several other things. It’s just fantastic. The steroids had quit working, so it’s been a Godsend. It’s awesome. I’ve always had a good attitude and a bright outlook and I really think that makes a difference in how things go healthwise, but there have been a lot of periods of me not feeling well. I would swell so much; all that weight comes on so fast from the steroids. All of a sudden you gain 40 pounds. It’s just terrible, you feel terrible. So, it really has been a struggle over the past 37 years. It is so important to catch this stuff early. One of my big goals for the kidney foundation was for us to be able to do screenings and a couple of years ago we got enough funds to have our own machinery to do them. Now we go out in the community and offer screenings so that we can help catch other people early. It’s very exciting. An early sign of nephrotic syndrome is swelling in your legs. I know women especially don’t think a whole lot about swelling in their legs, but it’s something that people really should pay more attention to. Some of the other signs are that if you’re losing protein in your urine it will get darker in color and it gets foamy. Diabetes causes a lot of kidney disease, although that wasn’t the case for me. High blood pressure is another thing that’s bad for the kidneys. I think it’s important to have a good relationship with your doctor. You want to have a doctor who will sit down and talk to you and you can ask all the questions that you want, and they’ll answer them in a way that you understand. Don’t ignore things because the sooner you can get treatment, the better off you’re going to be. I’ve learned that there are consequences to waiting. You can lose 80 percent of your kidney function before you realize what’s going on, so it’s a huge deal to pay attention and get tested. The earlier you find out about it, doctors can help prevent things from progressing so quickly. At the moment I have 82 percent kidney function. That’s a fabulous thing, but you have to stay on top of it. There’s no doubt that’s the most important thing, and that’s why I’m so passionate about people getting

screened. I really feel like part of my calling is to help the kidney foundation. I would have never thought about doing anything for it if this hadn’t happened to me. It’s a really important part of why I think I’m around.

Hemphill shooting a function for the Kidney Foundation of the Greater Chattanooga Area. (Opposite page) Hemphill at work in her home office.

Being optimistic is very important. I think if you get down about having a disease, it can cause you to be sicker. Be optimistic, and really be proactive too. I think you have to be proactive, if you’re not proactive you’re not helping yourself. I want to educate other people as well. I went on a trip with NephCure to Washington, D.C. a couple of years ago to try to get legislators to increase the budget for the National Institutes of Health (NIH). I’ve also gone before the Tennessee Legislature to help save the state’s renal disease program. I think it’s real important to stay involved. People should also really consider being an organ donor. It’s just incredible that you can do that; it totally changes a person’s life when they get a kidney transplant. My whole adult life has been with kidney disease. It’s been a crazy road, but I’m still thankful. I have a really strong faith. I really believe that God’s going to take care of me, whatever it is. I’m a graphic designer and I totally love life and I love what I do. The biggest thing that I’ve learned through all of this is how important it is to appreciate every single day. People who have never been sick, who have never had any kind of problem or anything remotely serious don’t have a clue how precious life is, and how wonderful it is to feel good. I have this personal expression that I say all the time: “Better is better.” Anytime I feel better, that’s what I say because it’s true. If you haven’t felt well for a long time, feeling better is a huge thing. There are some days I’ll be driving down the road and I’ll tear up and cry because I’m so happy to be alive and to feel good. So, I always try to have a positive outlook because it makes things easier if you do. I think it’s all about how you approach things that makes life better. I thank God that I’ve been able to have a good attitude about things, even when it was terrible and awful. I’m thankful today and have really been taking advantage of every terrific day. 23

In Your Words:

Lessons To Be Learned

As a caregiver, Larry Harris is preparing for his wife’s future with Huntington’s disease one day at a time

untington’s disease (HD) has been a big curveball for us. It’s such a slow, gradual disease and it really snuck up on us in many ways. My wife, Mary Jo, had been having symptoms but it was kind of misdiagnosed as depression and anxiety. In 2007 she was having problems at her job. It was frustrating for her. So, she resigned and we thought we’d find something different for her. Little did we know this HD was in the background. Her cognitive symptoms were starting to kick in right around the same time and it became literally impossible for her to really manage her life and get another job. We kept going for several years. Mary Jo was going to counselors, she was going to psychiatrists, she was taking medications, and finally in 2011 we started talking to the doctors about her early onset dementia-type problems. We went to a neuropsychologist, had tests performed, and he said she was definitely impaired. So we applied for disability, but without the HD factor, we were denied. It was so frustrating; I didn’t know what to do. Of course hindsight is 20/20, but Mary Jo’s older brother was also having cognitive-type issues at the same time. My sister-in-law called right around Christmas of 2013 to tell us he had been diagnosed with Huntington’s disease. I had never heard of it. That night I started reading about the symptoms and I knew. It hit home. I said, “This is what Mary Jo has, too.” 24

I started making phone calls and we were put in contact with Rush University Medical Center; they’re a center of excellence for HD in the Chicago area. For the first time it seemed like we were finally getting some traction. We got an appointment at Rush, and sure enough, on March 14, 2014, the doctor confirmed the diagnosis of HD for Mary Jo. From that point, we went ahead and reapplied for Social Security disability. We had years of documentation and information, but it’s difficult to know how to put that together to present it properly. That’s where Caring Voice Coalition (CVC) came in and hit a home run for us. I had all the pieces of the puzzle but CVC was able to really put it together. We received notice in August of last year that we were approved. That was a huge blessing. Missing that second income had really been hurting us for several years. I kept saying, this is a double-edged sword here, you’re fighting the financial piece and you’re fighting the disease, too. I say it’s like we were in a dark room fighting an opponent and we didn’t know who it was. Now at least

caringvoice.org • Spring 2015 • In Your Words

the light’s on in the room. We’re still fighting something, but we know what it is and we have a lot of support to help fight it, too. Before Mary Jo’s diagnosis, I didn’t know what was going on, and honestly I had a lot of anger and resentment. I wondered why she couldn’t get a job, why she couldn’t do this, why she couldn’t do that; it was frustrating and it was depressing. Now that’s not even a part of the picture. There’s no time for self-pity or feeling bad about yourself, it’s time to just do what you need to do. So, in that effect it’s been really liberating for me. Now that I know exactly what we’re dealing with, we can’t be bitter or angry because it’s not her fault. Apparently Mary Jo inherited the HD from her father, but we’ve checked with family members and there doesn’t seem to be any history, so it seems to be a first-generation diagnosis. That part has been really puzzling and baffl ing. I know it’s bothered Mary Jo. We’re trying to figure it out…where did this come from? The legacy piece has been difficult. We have one son, he’s a senior in high school, and he’s at risk, too. He has a

“I have to remind myself everyday still, but I think there are lessons to be learned from Mary Jo’s HD and I try to keep my eyes open for those moments.”

50% chance of having it, so that’s been emotional, thinking that he might also have a problem at some point. And it’s not just him, but all the children. Her brother has five children at risk so you worry about them, as well. Now that we can see our opponent it’s been a lot easier, but it’s hard to know what’s going to happen with Mary Jo. Everyone’s unique, of course, so we don’t know exactly what path her life will take, but at least we have support and we know somewhat what to expect. We go to a monthly support group meeting at a local hospital and we’ve met some good sources there that I can call at anytime if I have any questions. Just knowing that they’re there if I need them is comforting. I don’t think Mary Jo will really need 24/7 care for another 5-10 years, so we’re dealing with today, and hoping for the best, and planning for tomorrow the best we can. I want to help Mary Jo all the way. I prefer not to put her into nursing care, or a nursing facility, if I don’t have to. I want to try to take care of her for the rest of her life. I think it is important to remember yourself, too, especially with exercise and eating right. Try to do everything you can to not forget about your own health, both mentally and physically. Once I found out Mary Jo’s diagnosis, it kind of just clicked. I felt like I really needed to get myself as strong as possible because this is going to be a long, challenging fight and my family needs me more than ever. So, I need to give everything I can, and be around as long as I can to be there for them, and

Mary Jo and Larry Harris at their son Adam’s winter band concert.

be as strong as I can to help them. It’s going to be one heck of a battle, but I’m not going to give in or let it beat us. I try to find the time to walk and I’ve been trying to get her to go, too. Really, we just structure the day to try and make sure we get everything in. I try to read; we’re always going to the library. And in the middle of this we also adopted a puppy. It’s good for me, though, because I’ll take walks with the dog outside and that’s a way for me to clear my mind. Right now there’s plenty of time to be together, and have fun with each other. She still enjoys going to shows and concerts, and gardening, and of course we’re trying to do more walking together. And we try to have a sense of humor about things. Since she has trouble trying to remember words, we call it our daily game of charades. We act out whatever she’s trying to say. So we keep a sense of humor. I think that’s huge.

Huntington’s Disease (HD) Huntington’s disease is an inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders with a wide spectrum of signs and symptoms. Which symptoms appear first varies greatly among affected people. During the course of the disease, some disorders appear to be more dominant or have a greater effect on functional ability.

This disease scares me when I see how debilitating it can be to those suffering through the end stages of HD but I’ve postponed thinking about that right now because I choose not to be afraid. There is so much work to do and things to get done, including getting myself healthy and strong, so I’m not going to worry about that right now. I know if I do all the things that I have chosen to do right now, at that point in the future when Mary Jo’s health starts to decline I will be ready for it and I’ll deal with it when that day comes. I have the Serenity Prayer posted in the den near my work area and try to say that prayer every day. I find it helpful to focus on the areas of our lives that I can change and make a difference today. Things that you think you never could have coped with before, once they’re presented to you it’s almost like you’re forced to take it to another level that you didn’t even know existed. Mary Jo’s diagnosis has been very difficult to deal with, but it’s taught me to try to be more understanding, more patient, have more compassion, and don’t sweat the little stuff. It’s reminded me of what’s really important in life, and not to get upset over life’s daily inconveniences. I have to remind myself everyday still, but I think there are lessons to be learned from Mary Jo’s HD and I try to keep my eyes open for those moments. I think there is a greater meaning to all of this and I try to see that whenever I can. 25

A Dose of Adherence By Robert E. Mayfield, M.D.

Do you comply with your medications? Are you adhering to your regimen? If not, here are statistics to motivate you: • Poor adherence results in up to $100 billion in medical costs annually.1

• Up to 125,000 lives are lost each year due to nonadherence to medication regimens.2

medication, complications as a result of NOT the individual is taking an active role in the taking a medication and the particular side efprogram they are practicing, while the word fects of medications with possible ways to mitcompliance implies that the individual is more or less igate them. following directions. This is why it is more important to • The program of health care that suffers from address concerns of medications and the taking of them problems of limited time for patient appointmore appropriately as adherence. ments and difficulties with access to care. Up to 50 percent of patients do not take their medications as prescribed.3 Although factors involved for this lack of adherence are myriad, there are three that are These problems are not new to medicine in any way. basic and relate to: Going back 2,000 years, the Hippocratic Oath states • The patient, who often lacks the involvement to the physician to “not only be prepared to do what is and health literacy demanded in administering right himself, but also to make the patient…cooperate.” More recently, our former Surgeon General Dr. C. their medications. Everett Koop stated, “Drugs don’t work in patients who • The physician, who is often ineffective in com- don’t take them.” munication regarding reasons for prescribing a 26

HE WORD ADHERENCE IMPLIES THAT

caringvoice.org • Spring 2015 • In Your Words

In efforts to enhance successful adherence, you should know your medications and why you are taking each individual prescription. In practice, many patients are notorious for stating, “I take a pink square one and a round white one.” Another frequent response is, “You should have them in my record.” Know your medications. If your doctor does not, insist that you review them at every visit. Keep a list of your medications with you at all times. While reviewing medications at every visit may seem redundant, there are many factors that make this necessary. For instance, a doctor may forget to remove a discontinued medication from your list. Insurances change their formularies (menus of drugs covered by the plan) like people change underwear. As a result, different medications are often substituted into a patient’s regimen. Finally, most patients do not just see one doctor, especially those with a chronic or rare disease. Therefore, other physicians may be changing medications. Everyone must be on the same page and ultimately, the patient is as equally responsible as the physician for maintaining a correct list. Once you know your medications, it will be easier for you to take them. However, you must also remember to take them. Incorporating a pillbox into your routine is most often the best way to achieve this critical goal. A pillbox provides you with a concrete visual cue as to whether you have taken your medications. Also, it allows you to keep your pill bottles in one secure and dedicated location. If you misplace your pillbox, at least you know where your main supply is. If you misplace a pill bottle, this can result in the loss of a month or even up to 90 days of a medication. This can be a very costly problem as not many patients are going to pay out-of-pocket for a misplaced prescription. An insurer or pharmacy will not pay for such a loss. Other methods to enhance your ability to remember to take your medication can involve a checklist on your calendar, setting alarms, or even using a service that can send you text messages as reminders. Problems with side effects will also result in a failure to adhere. Rely on your physician for information on the most common side effects when you are beginning a drug that is new to you. In practice, a physician will know the most common side effects from feedback from his or her patients. While the pharmacy will provide you with a detailed list of side effects that is thoroughly researched, please bear in mind that these side effect profiles come from comparison to placebo (an inactive substance) and because our bodies do interesting things, not everything we experience is a true drug side effect. Make sure you get the answers that you need from your physician.

Getting those answers takes time for which the system often does not allow. When scheduling an appointment you can always try to ask for an extended visit or explain that you have multiple issues to discuss. Another way to help you in your education and adherence is to set up more frequent visits based on your needs and not the direction of the physician. Remember that adherence is a group effort. It is not solely your responsibility nor is it the sole responsibility of the physician. Adherence mandates a team approach.

Once you know your medications, it will be easier for you to take them. However, you must also remember to take them.” Cost can prove a huge barrier to medication adherence. Some patients may take a medication every other day in order to “stretch things out.” Some will only take a medication when they feel bad. However, many disease states are silent in the early stages and feeling bad is a sign of progression of a disease and potentially permanent end-organ damage. Such nonadherence may make more medications necessary, and a greater expense. To help meet the needs and requirements of successful adherence, Caring Voice Coalition is here. It is our mission to provide financial, educational and emotional support to our patients. Through financial support there is the elimination of the issue of cost. Educational and emotional support can assist in getting around the barriers discussed in taking your medications. 1. Osterberg L, Blaschke T. Review Adherence to medication, N Engl J Med. 2005 Aug 4; 353(5):487-97. 2. ScriptYourFuture.org 3. Brown M, Bussell J. Medication Adherence: WHO Cares?, Mayo Clin Proc. 2011 Apr; 86(4): 304–314. doi: 10.4065/mcp.2010.0575

In Your Words:

Overcoming

Obstacles

Kathleen Darrell finds purpose in lymph nodes in my lungs appeared to undiagnosed pulmonary hypertenher life with idiopathic pulmonary to be enlarged. However, he had sion. So, there’s a strong possibility hypertension and pulmonary fibrosis compared them to previous chest x-rays I had the pulmonary hypertension as

HAVE IDIOPATHIC PULmonary arterial hypertension and idiopathic pulmonary fibrosis. I’ve been told they are running independent of one another, yet simultaneously. We don’t know the cause. I was a very healthy person so this hit me like a Mack-truck. In 2005 I had a major surgery and 36 hours afterward I got pulmonary edema. The doctors were confused because usually post surgical pulmonary edema shows up immediately after surgery, it doesn’t wait 36 hours. I ended up being in the hospital for an additional week. A year later, I had to have an emergency appendectomy and the same 36 hours after surgery I got pulmonary edema again. Th at time I had to be on oxygen for a month. Then, in March 2007 I started with a cough that just wouldn’t go away. It was a dry, hard, nonproductive cough. I was chalking it up to spring allergies, but it wouldn’t go away. Th at winter I began experiencing shortness of breath, so I asked the doctor that I was going to at the time if those two incidents of pulmonary edema could have caused some damage to my lungs. The doctor said probably not, but he wasn’t quite sure. In March 2008 I went to see a new doctor. I was explaining my symptoms and he sent me for a pulmonary function test and a chest x-ray. The night of the chest x-ray he called me at home, spent about 45 minutes on the phone with me, and said that the

and they looked about the same, so he wasn’t concerned that it was cancer. He said I failed a pulmonary function test miserably, though, and referred me to a pulmonologist in Albuquerque. I live in Farmington, New Mexico so I had to travel 190 miles. But, I was able to get in very quickly and in September 2008 I started on oxygen full-time. The pulmonologist repeated the pulmonary function test, echocardiogram and chest x-rays. At that time they weren’t sure if one disease was secondary to the other. My options were to immediately start treating the lung disease or do a lung biopsy to determine the type of lung disease. I opted to have the lung biopsy done in November 2008. When I went for the biopsy, my husband and I talked to the anesthesiologist before the surgery to tell her about the pulmonary edema I had gotten the two previous times. She told me it was more than likely due

Kathleen Darrell and her husband, Tommy, enjoying their 21st wedding anniversary. Hawk and rose photos by Kathleen Darrell.

caringvoice.org • Spring 2015 • In Your Words

early as 2005 without it being officially diagnosed. In December 2008 my pulmonologist was able to tell me that the type of pulmonary fibrosis I have is nonspecific interstitial pneumonitis. It’s a treatable kind. Not curable, but treatable, so they started me on massive doses of steroids. Three months later the doctor redid the pulmonary function test, the chest x-ray, and the echocardiogram. The pulmonary function test remained stable, the chest x-ray remained unchanged, and the echocardiogram showed my pulmonary pressure was elevated. That’s when it was determined the two diseases were running independently of each other. I then began treatment for the pulmonary hypertension. I started on minimal medications, but things just kept progressing. When I did my first six-minute walk I was only able to go 134 meters and I had to stop several times. My walks have gotten better since, and although my pulmonary pressures are pretty stable, the right side of my heart is now enlarging to compensate. I’m a public school teacher. I was a special education teacher for 19 years. As of the last three years I’ve been teaching first grade and getting around the classroom is getting more difficult. I’m progressing to the point where it's becoming more difficult for me to live a full life. I’m okay when I’m at school because I've had all night long to rest up, but by the time I go home I am so wiped out that all I want to do is rest. I don’t really have the motivation or the

stamina to get out and do things in the evenings. So, it has changed my life in that respect. My husband and I used to get up every morning, especially in the summertime, and go walk along a river walk path. I can’t do that anymore. It’s a lot of up and down, it’s a lot of uneven terrain, and I have to stop every 10 or 15 yards to catch my breath. It has made those kinds of things difficult. But, several people have told me that they admire me because they see me going to work everyday, lugging that oxygen tank around, and just doing my job and not complaining. Every time I see somebody they ask if I’m still working, and when I say yes, they’re just in awe. I do it for my students. I show up as many days as I can. There are days that I’m sick, and when I get sick, it knocks me out, but I like being there for my students.

grandchildren. The biggest thing that keeps me going is my family. I want to spend every precious moment with them that I can. Everyday that I’m still here, there is something that I’m supposed to be doing; even if it is just being an inspiration for someone else, that’s part of God’s plan for me. You never know whom you’re affecting by being around. Smile at someone everyday because you never know, that person might be having a bad day and your smile could change his or her outlook. I just can’t help but think that everyday is a gift. None of us are guaranteed tomorrow and I have no idea who I might come in contact with each day of my life that I will make an impact on in some way. My advice for newly diagnosed patients is to be proactive in your medical treatment. Do research on your own; write down questions before you go. Take a notebook with you. I keep a three-ring binder of all of my medical reports. Every time I have to go to a new doctor, I take that with me so that they can look at it. I’ve gotten copies of everything… echo reports, lab results, doctors visit notes. I think there are a lot of patients who don’t realize that they can ask for those things. Also, if you’re starting a new medication, ask why you’re taking it, what are the side effects, what is the purpose, and how long should it take before I expect to see benefits? Make a list of your diagnoses, medications, doses, what it’s for, and surgeries you’ve had. Let everyone know it’s there so that if you are ever in a situation where you can’t communicate effectively someone around will know how to access your information to help emergency responders treat you more effectively. Take life one day at a time, and don’t worry so much about the future; the future will take care of itself. Take care of yourself. That’s another piece of ad-

Take life one day at a time, and don’t worry so much about the future; the future will take care of itself.” As much as I look forward to the day that I can retire and spend more time with my husband, I’m not looking forward to not being able to make an impact on the lives of these kids I teach every day. I want to help them realize that life is not always a bed of roses, but you can work through the obstacles that have been put in your path and come out successful on the other side. I credit a lot of my ability to sustain for the last six-and-a-half years, since my diagnosis, to my faith. I have a lot of faith that God has a plan for me, and I’m still here because his plan for me has not come to fruition yet. My husband has been a wonderful support for me, too. My family inspires me. I have seven wonderful stepchildren and 13 beautiful

vice that I have for newly diagnosed patients. Listen to your body. It will tell you what you need, and what you don’t need. And don’t stop. Yes, I take a break, but before I go to work I do at least 15-30 minutes of an exercise routine every morning. When I was first diagnosed, I weighed almost 220 pounds. This morning I stepped on the scales and I weigh 120 pounds. I have lost almost 100 pounds. I didn’t do it by going on fad diets or anything else other than portion control. So, if your doctor encourages you to lose weight, you need to do it. It will make you feel better and it will help with your breathing. I want people to know that they’re not alone. There are other people out there who are experiencing the same thing you’re experiencing. In my area I know there are other people with pulmonary hypertension. I’ve met a few of them, but there aren’t any support groups organized here in the Four Corners area. I’m hoping that maybe when I retire I might be able to get something started. I know there are support groups in New Mexico, but for me to participate in any of them I would have to travel at least 200 miles to get to one. So, I’d like to network around here to get something started. There are a lot of people out there who think that nobody knows what they’re going through, and that’s not the case. This is a way to reach out and say, if you’re in this area, I’m here too. Let’s get together and talk, even if it’s just to commiserate. It’s also very important for caretakers to be taken care of. There needs to be support groups not just for the people who are experiencing the illness, but also for the caretakers and family members of the people who are going through it. Even though the illness is affl icting me, it’s not affecting only me. It's affecting all of the people in my life. I think it’s important for anyone dealing with a chronic illness to share what’s going on. It can be the next step in what they need to help themselves. 29

Next Issue TAKING CHARGE OF YOUR HEALTH The summer issue of Community will focus on your overall health and how to manage it. From healthy eating tips to exercise options and ways to cope with stress, we’ll have your total well-being covered — in mind, body, and spirit.

We want to hear from you! What’s your favorite healthy recipe? Share it with us! We’ll be picking our favorite reader recipes for the summer issue. Have an exercise routine that works well for you? We’d like to hear about it! Share your wellness tips for our summer feature on exercising with a chronic illness. We welcome your feedback, questions, and story ideas. Email us at magazine@caringvoice.org.

How will you remember

Caring Voice Coalition? Planned Giving You can make an extraordinary difference in the lives of others by making a planned gift to Caring Voice Coalition. Remembering Caring Voice in your will or trust is a simple way to leave a lasting legacy. Contributions including cash, appreciated securities, or a charitable bequest help to ensure that Caring Voice continues to provide financial assistance and patient support to aid in the journey of those with chronic illnesses. Your donations are fully deductible for estate tax purposes. For more information on how you can include Caring Voice in your estate plans, please contact: Rebecca App, Director of Finance 888-267-1440 ext. 106 financedept@caringvoice.org

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Caring Voice Coalition, Inc. (CVC) is a national 501(c)(3) non-profit, charitable organization that improves the lives of patients with chronic illnesses. We do this by offering financial, emotional, and educational support.

Our Programs • Financial Assistance • Alternate Coverage • Therapy Appeals • Social Security Disability • Patient Education

T he D i s e a s e s We Supp or t To best serve our patients and expand our reach, CVC's list of supported diseases and chronic illnesses is always growing. To see a complete list of disease funds, as well as links to helpful resources, please visit www.caringvoice.org or scan the QR code to the right.

How We He lp CVC’s programs are a direct response to patient needs. In addition to medical and financial challenges, chronically ill patients face significant obstacles to starting and remaining on therapy. Our programs remove those obstacles.

1-888-267-1440 CVCInfo @ caringvoice.org www.caringvoice.org

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