Fighting for Equality in Healthcare

Fighting for EQUALITY . . .

LifeLines for HealthSM Disclaimers

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Letter From the Editors

Welcome!

How blessed we were to see sooo many of you last summer and fall as live programming became a reality again! Just seeing your faces has made the struggle of the last couple of years all worthwhile. Be sure to read our participants stories in Community Chatter and what it meant to be together.

This edition is about….CHANGE!! If life with a chronic medical condition has taught me one thing, it is that very little stays the SAME. One of my favorite sayings by Neal Donald Walsch is that “Life Begins at the End of Your Comfort Zone.” Every one of us have been pushed to that edge, and the miraculous thing is how we adapt, accept, and grow. Now some of you may approach change kicking and screaming! Read about how to make peace with it with Dr. Gary McClain in Family Matters.

The landscape of our community and society has changed dramatically in the last 4-5 years for a vast number of reasons - COVID being one of them. To continue to provide the programs and services our participants have come to rely on, Comprehensive Health Education Services (CHES) and nSpiration have combined to form a 501 c 3 non-profit named CHES Foundation, Inc. CHANGE in motion! Want to help? See how your donations make a difference.

Since 2016, we have been blessed to carry the torch Barb Forss, founder of LadyBugs picked up in 1998 after being diagnosed with FVII deficiency at the age of 47 to advocate for women with bleeding disorders. The paradigm is shifting, slowly, but building momentum. In our feature with Dr. Joanna Davis, she talks about this change, what diagnostic tests women need, what they mean, and how to advocate for diagnosis, care, and treatment.

Want to make changes in your nutritional life? Read onwe have a lot to cover!

Our website, https://CHES.foundation is undergoing a transformation; be sure to stop by! Like us on Facebook and follow us on Instagram to stay apprised of how to keep up to date and connected to programs. Don’t forget to share with friends. If you have an idea, comment, or suggestion, don’t hesitate to let us know at info@CHES. foundation. We love to hear from you!

Hoping that the winter brought you closer to the people who truly matter in your life and brought rest and rejuvenation. Be safe, be well, and we look forward to seeing you again in 2023!

- Janet Brewer & Eric Lowe

jbrewer@CHES.foundation

elowe@CHES.foundation

“We must never forget that we may also find meaning in life when confronted with a hopeless situation, when facing a fate that cannot be changed…When we are no longer able to change a situation-we are challenged to change ourselves.“

-Viktor Frankl

FEATURE

11 I Fighting for Equality in Healthcare

Since the inception of healthcare, the needs of women have been minimized or ignored. Many of which are right here - in our own backyard. Women who display irregular bleeding are often denied treatment and a proper diagnosis simply because we are traditionally taught that only males can have many bleeding disorders like hemophilia. This issue's feature offers tools, tips, and resources to approach even the most skeptical healthcare providers.

CONTENTS

WHAT’S NEW

3 I Introducing CHES Foundation

For the past 14 years, CHES has had the pleasure of serving the bleeding disorders community. "A for-profit organization with a non-profit heart" - we used to say. As of Jan. 1, CHES officially transitioned to a 501(c)3. Find out what that means for us all.

COMMUNITY CHATTER

5 I Pulse Check: Reemergence of Men's Inhibitor Support

The perfect storm, or rather, "imperfect" storm of market shifts, tighter budgets, a sluggish economy, and a pandemic quickly diminished one of the most heavily supported sections of this communitythose with inhibitors. Two of our inhibitor programs were resurrected this past summer. Participant, Lavang Vu explains the impact this has on his life, as well as others.

7 I Elizabeth's Inhibitor Family

An inhibitor diagnosis is a scary experience; especially for those who are new to bleeding disorders. These are the times of 'fight or flight'. The Robles family chose fight when they attended 'After the Shock', an inhibitor family camp where everyone, both patients and professionals, understands the struggles. Mother, Elizabeth tells their story.

FAMILY MATTERS 21 I Facing Change: Kicking & Screaming... Accepting... Coping... Growing

These past few years have inflicted a lot of change into our lives. Like a ripple effect, one thing happens and ten things are forever altered in our personal universe that we've found so much comfort in. Our favorite therapist, Dr. Gary McClain has a simple step process to help embrace change and make the best of it. Who knows? Perhaps you'll come out better than before after applying his methods and by gaining the right perspective!

BLOODLINES

27 I MASAC Makes Recommendation for Genotyping

There's still so much we don't understand in bleeding disorders. But we continue to advance. The availability of genotyping continues to increase, yielding fascinating, new information. Learn the benefits as well as NHF's Medical and Scientific Advisory Council's recommendations for improved quality of life.

MIND BODY CONNECTION

37 I Habits to Improve Your Health After the Winter

The majority of us fall into the abyss of holiday (and overall winter hibernation) eating habits that are just plain cruel to our bodies. Registered dietitian, Megan Allen has a well-balanced plan served with simplicity, fused with obtainable goals, and accompanied with a side of enjoyable compromises that can help us all feel better inside and out.

CONTENTS

Introducing……

by Janet Brewer, M.Ed

Since its inception in 2009, the heart of Comprehensive Health Education Services has always been driven by accuracy, compassion, and integrity. Programming has consistently been designed by our participants; YOU ask…WE listen. The PEOPLE in our community make the difference. We have been blessed with funders who know our HEART…our commitment. As an organization we have brought innovative educational experiences to the most under-served members of the bleeding disorders community:

Inhibitors:

• Inhibitor Family Camp

• After the Shock

• Leverage

• Momentum

• Moms Uninhibited Meeting

• The only newsletter specific to the inhibitor community at that time, LifeLines for Health

Ultra-Rare Bleeding Disorders:

• F7 Retreat

• Glanzmann’s Thrombasthenia Symposia

• One Drop

Women with Bleeding Disorders:

• LadyBugs

Why may you ask? Because we live bleeding disorders, each and every day. Our founders, Janet Brewer and Eric Lowe have over 100 years of combined experience with bleeding disorders that run the gamut from hemophilia, vWD, AIDS, HIV/Hep C, inhibitors, patient, parent, sibling, family member. We don’t just know bleeding disorders-we LIVE them.

Based on our participant’s feedback, nSpiration was founded as a 501 c 3 in 2015, to assist families through hardships, and provide needed travel funds to attend national educational events. These events are a lifeline for those who seldom have met another person in their state with their particular set of lived experiences with their specific bleeding disorder.

There have been multiple changes in our community over the last 14 years, and like many national and regional patient advocacy organizations, CHES has pivoted, adapted, and reinvented itself. Effective 01/01/2023, CHES and nSpiration have combined to create CHES Foundation, a 501 c 3 with the same heart when it was founded back in 2009. Same people, same compassion, accuracy and integrity, same commitment to YOU, our families.

But we can’t do this without YOUR support!

Fundraising will become a big part of our continued ability to bring you the types of programs/events you have come to trust and rely upon. We cannot make them happen without you our CHES FAMILY.

Get involved. Invite others. It takes a village!

https://ches.education/fundraising

Reemergence of Men's Inhibitor Support

As a person with a rare bleeding disorder, I don't get many chances to meet fellow blood brothers that live all over the country. Myself, and others alike, need programs like the hemophilia conferences. There are conferences for every field that you can imagine. These conferences are very important and are integral parts of the scientific community. Most people do not realize that the scientific community also includes the patients, whether they are rare or not. As exceptional as the conferences are, the experiences of inhibitor patients are vastly different from those who do not have an inhibitor. We need completely different medications and face a unique set of challenges. For example, a patient with mild hemophilia may lead a more relatively normal life due to more stable factor levels. And in turn, he or she may experience fewer bleeds in a lifetime. Inhibitor patients, on the other hand, experience significantly challenging, more frequent bleeding

symptoms. I used to get an ankle bleed once every two weeks or so seemingly out of nowhere at times. To learn more about these challenges and advances in the field, Momentum was created several years ago as a program for individuals with an inhibitor to come together and learn from the amazing speakers, as well as each other.

There is a problem in the inhibitor community. The resources once available have dried up since the devastation of the pandemic. We no longer have the inhibitor summits from NHF or any similar conferences. CHES is the only group in the entire United States that provides conferences specifically for inhibitor patients. It all really started with the inhibitor family camps back in 2010 from which I had the pleasure. CHES has been supporting the inhibitor community for a very long time. And today, seems to be the only provider of insights into the advances in treatment and care for inhibitor patients.

More info on Momentum https://ches.education/momentum

Momentum has helped me form friendships that will last a lifetime. And the valuable information it unveiled significantly helped with my advancement as a biology major - specifically, with various projects and my senior comprehensive exams for biology. As a science major, my disorder was really a strength because I could then research it to my heart’s content. It is difficult, however, to do research without a guide of some sort. That is what programs like Momentum provided for me. It talked about topics related to hemophilia that were seemingly unrelated and sparked my interest to investigate further. One example of this is the use of ultrasound and the monitoring of joint health, which was a session given by Dr. Nihal Bakeer of the Indiana Hemophilia and Thrombosis Center. It shows how the advancement of medicine and technology can impact the care provided by the doctor with better outcomes for the patient.

Made possible through the support of:

Besides the science of our disorder, one extremely important aspect is the sense of community. Our community is not very large and is scattered all around the nation, so it is difficult to stay connected. Luckily, events like these enable us to get to know one another and bond with each other through shared experiences. We all are beautiful and unique. It is all about the way we go about it. I now believe that my hemophilia is one of my strengths because of the hardships I went through and the many relationships I made along the way with fellow members of the hemophilia community. We may be of different cultural backgrounds and ethnicities, but one thing will never change. We are blood brothers and that is a bond that transcends boundaries and borders.

Lavang Vu is a senior biology major with a music minor at the university of Dallas in Irving, Texas. His experiences with hemophilia and an inhibitor inspired him to go to medical school in the future.

Elizabeth's Inhibitor Family

Iwant to start by saying we are so grateful to the Inhibitor Family Camp for giving us the opportunity to attend this unique wonderful camp.

My name is Elizabeth, we are a family of four my husband Jose, my oldest son Rob age 13 (not affected), and Alex now 2 years old with severe hemophilia B with an inhibitor.

As a mother of a newly diagnosed baby, I felt/feel terrible knowing that my sweet boy has a bleeding disorder and there is nothing in my power to change that. At the very beginning I felt so confused I had no idea what hemophilia was. At times my mental health seemed constantly unbalanced and constantly surrounded by fear of the unknown. Most of the time I would find myself crying about the "what if". Weeks passed by, and we accepted hemophilia to be part of our lives.

Four months later Alex had his first bleed, fear surrounds us again. Our hematologist recommended a port, again fear invaded us. After months, we finally decided to have Alex’s port placed, with high hopes thinking our little boy will have a childhood close to any other child his age. He will have the freedom to be a one-year-old child, to run, play, jump without the fear of getting seriously hurt. The surgery went well, the plan was to infuse factor twice a week, everything seemed so promising…. until 7 days after surgery. After his second infusion he got a huge hematoma on the port site. Sure enough, labs came back a week later with the detection of an inhibitor, now what is an inhibitor? More to learn, fear vanishes our hopes and dreams, an inhibitor could be a terrifying enemy.

Factor was infused twice a week for 2 and a half months. Despite pre-medication for allergies, the allergic reaction was visible for most of every infusion. Instead of waiting for the body to respond to the medication, we decided to stop trying.

There are not a lot of people that will understand the bleeding disorder language, unless they are affected and have an inhibitor: often making us feel alone. Luckily at the camp everyone spoke the same language when it comes to inhibitors, and we continue to learn. CHES gave us the warmest welcome ever and made us feel that we are not alone. The support and compassion we received was unbelievable and have not experienced that anywhere else. The team was very attentive, understanding, caring and knowledgeable and made us feel part of their team.

Each session was educational, informative, and supportive from kinesio taping to chatting with a doctor. It reminded us that there is much more than just living with fear. It provided us with having a better understanding about inhibitors and educating/ preparing ourselves for different situations we may encounter.

"Luckily at the camp everyone spoke the same language when it comes to inhibitors..."

It was a beautiful peaceful place to spend time with the family, away from the daily stress-it felt nice to get away. The activities were fun, such amazing experiences with fishing, arts/crafts, aqua therapy, boating, cooking, teen activities…. everything was wonderful.

Meeting with other parents, sharing experiences gives us hope there is a light at the end of the tunnel.

My takeaway from camp - I will be my son's voice, I will learn to advocate for him.

We truly appreciate CHES taking the time and willingness to serve the community families like us. I wish all parents who have a child with an inhibitor learns about this camp, the quality of experience provided is truly a blessing, it felt like a load was taken off our shoulders. Three days went by so quickly, I know there is much more to learn. I look forward to the next camp to continue to learn and interact with our inhibitor family.

Camp is a personalized experience for our family.

-The Robles Family

Made possible through the support of the Hemophilia Alliance Foundation and Novo Nordisk.

More info on After the Shock https://ches.education/after-the-shock

EQUALITY for in

Fighting Healthcare

As the saying goes, looking at how life for women has changed over the past century and a half, there is no question that we’ve “come a long way”. In many nations women can get an education, hold a variety of jobs, join the miliary, vote……

But women with bleeding disorders still may face an uphill battle with health care providers should they seek medical attention for heavy periods or iron deficiency.

Despite the best efforts of the HTC network and organizations like NHF and the Foundation for Women and Girls with Bleeding Disorders, there are many, many health care providers (and “regular” people, too!) who do not believe that women can have a bleeding disorder. How often have you been told that only men have hemophilia - as if hemophilia is the ONLY bleeding disorder and, of course, it only affects men???

By: Dr. Joanna Davis

There was a terrific article by Dr. AC Weyand, which appeared in the medical literature in 2020, entitled “Sexism in the Management of Bleeding Disorders”. Bottom line: this validated what we all know! There is a lack of knowledge that women have bleeding disorders in general and that carrier women CAN have bleeding issues. Until recently, fewer resources were available for women and girls. A very sobering fact was that, on average, it took 16 years between the onset of bleeding symptoms and the diagnosis of a bleeding disorder! While this statistic has probably improved courtesy of the increasing efforts by HTCs and partner patient advocacy organizations, we are all too aware that years may pass while women live with and suffer from bleeding symptoms.

Just a brief list of bleeding disorders which are clearly known to affect women:

• Von Willebrand disease: the most common bleeding disorder worldwide

• Hemophilia A/B carrier: second most common condition to affect women because women who carry the gene for Hemophilia A/B may be asymptomatic OR may have low factor 8/9 levels and actually have bleeding symptoms and mild Hemophilia!!!!!

• Other disorders include: factor deficiencies - V, VII, X, XI, XIII, defects in the fibrinolytic pathway; severe platelet dysfunction including Bernard-Soulier syndrome, and Glanzmann’s thrombasthenia

• There are other, much less common disorders, and your family history is essential in helping your provider make a diagnosis.

The inheritance of these disorders varies. Certainly, management of different disorders in different situations will vary --- specific factor concentrate, platelet transfusions, fresh frozen plasma infusions… Sometimes the bleeding symptoms an affected person experiences differs from one disorder to another. But, for women, the challenges of unusually long and heavy periods cross all diagnostic lines.

The most common issues—outside of pregnancy – which bring a woman to a medical provider are heavy periods and iron deficiency. Fifteen to twenty percent of women with iron deficiency actually have an undiagnosed bleeding disorder!

Recent studies suggest that at least 40% of women with heavy periods --- now referred to as “heavy menstrual bleeding” or HMB –may have an underlying bleeding disorder!!

Determining a bleeding disorder as a cause of or contributing factor to HMB or postpartum hemorrhage (excessive bleeding after childbirth) can change the management, preventing unwanted blood transfusions, and even hysterectomies. (Of course, identifying a bleeding disorder will also improve the management of affected women in case of other, non-gynecologic procedures, or in the setting of an accident or injury.)

DO YOU SUFFER FROM HMB?

Heavy menstrual bleeding—formerly referred to as menorrhagia - is characterized by the following:

Bleeding for longer than 7 days

Flooding or gushing blood that limits daily activities, such as social activities, school, or exercise

Changing a tampon and/or pad every 1-2 hours or less on the heaviest day

For your own information, if you are questioning the need to see your provider...

And, according to the International Federation of Gynecology and Obstetrics (FIGO) -If a woman says her period is too heavy, it is too heavy and should be taken seriously by a health care provider.

Passing blood clots that are bigger than a quarter

Iron deficiency or prior anemia needing treatment

Women have learned to advocate for husbands, sons, and brothers through the decades which saw the birth of the Hemophilia Treatment Center and the advances in the preparation and use of factor replacement therapy, culminating in today’s reality of prophylactic infusions with purified and recombinant concentrates, non-factor therapies and, now, the reality of gene therapy for

hemophilia B. As women we are REALLY EXCELLENT at advocating and speaking up for those we love. But how challenging is it to now have to speak up and advocate for ourselves?

We are the ones who need to spread the word and educate not only the public but our health care providers as well.

Have you ever heard of BAT?

How do we do that? It starts, as does everything else, with having enough knowledge to ask questions and to have expectations of how the medical encounter should proceed.

Your provider will “take a history” - ask a lot of questions which should include those focusing on your bleeding issues. It’s not enough to ask, “How are your periods?”

Have you ever heard of a BAT? Neither the wooden stick used to play baseball, nor the winged creatures that fly at dusk, a Bleeding Assessment Tool (BAT), is a structured list of questions designed to gain specific understanding of the frequency and severity of bleeding symptoms.

Here are just a few BAT examples to name:

• bruising

• nosebleeds

• period/postpartum bleeding

These questions may be asked directly, or you may be requested to fill out a form. The answers are scored and, depending on the total number of points, your situation will be ranked as consistent with, or not likely to be consistent with a bleeding disorder. This score will inform the next steps in terms of evaluations and referrals.

• treatment of anemia with iron supplements or transfusion

• surgical bleeding

• diagnosis of iron deficiency

You can Google the ISTH-BAT for an example of one of the more commonly used questionnaires.

https://bleedingscore.certe.nl/

Providers who are not part of an HTC are less likely to be aware of this very useful tool. But here are independent questions which will give a lot of information:

1. How old were you/your child at the time of the first period?

2. How many days does your period last?

3. How many of those days would you say are “heavy” flow days?

4. On those “heavy” days, how often do you change your pad or tampon? What kind of pad or tampon do you use ---- regular strength, overnights, super plus, both a pad AND a tampon?

5. Do you ever leak around the pad/tampon, staining your clothes or your bed?

6. Do you pass clots ---- solid-looking chunks of blood? If so, are the clots as big as – or bigger than – a grape?

7. How often do you get your period? How do you keep track of when your period comes - do you “just remember” or do you use a diary? – either a pen and paper notebook, real calendar page, or an app on your phone?

8. Have you ever had nosebleeds? How old were you when they started? How often do you get nosebleeds”? Are they associated with illness/prolonged exercise outdoors? How long do they last? What do you do to stop the bleeding?

9. Do you bruise easily? Where are the bruises - arms/legs, chest/ back? Do you remember having trauma at the sites where the bruising shows up?

10. Have you ever been diagnosed with or treated for low iron? When? For how long? Was the iron supplement taken by mouth or intravenously?

11. Have any women in your family (both your mom’s side and your dad’s side)

a. Been recommended or received a blood transfusion due to very heavy periods or low iron?

b. Been recommended or received a blood transfusion because of unusually heavy bleeding after giving birth?

c. Been recommended or have undergone a hysterectomy as management of heavy menstrual bleeding or unusual bleeding after childbirth?

12. Have you or any member of your family experienced unusual bleeding after dental extractions or other surgeries, which was of concern to the surgeon?

13. Do you take or use any kind of blood thinner, including aspirin? If yes, how much and how often? Why are you using these medications?

14. Did you/your child ever get lumpy bruises with either her baby shots/immunizations or more recent vaccinations?

A suggestion would be that you become familiar with these questions and have your answers so that YOU can present them to your provider for discussion.

2023Education Programs

Virtual programming

We'd like to thank all who attended our LadyBugs spring webinar series concentrating on the needs of women with bleeding disorders.

Miss the live webinars?

Watch them on YouTube: https://www.youtube.com/@ches1

Comprehensive Health Education Services has been serving the needs of those with rare bleeding conditions since 2009.

As long time members of the bleeding disorder community, our mission is to inspire awareness and self-reliance for patients with chronic health conditions, their families, and their communities.

More details on our programs can be found on our website: www.ches.foundation

To receive info on additional upcoming programs and webinars visit: https://ches.education/communications-profile-form

LIVE

programs

July 28-30, 2023

Westin Atlanta Airport Hotel

June 23-26, 2023

Camp Zeke - Lakewood, PA

September 10-14, 2023

Camp Collins - Gresham, OR

November 3-5, 2023

Tampa, FL

What else is likely to occur during the visit?

A physical examination, of course, since there are conditions other than a bleeding disorder which can cause heavy menstrual bleeding.

Hypothyroidism (low thyroid hormone production) is a well-established cause of heavy periods. Polycystic ovary syndrome (PCOS) is another.

Mothers of teens, and teens as well, may be concerned that an internal GYN examination is automatically indicated. It most definitely is not! The decision to perform an

internal exam rest with the GYN, but our adolescent GYN at our girls only clinic (we call it the Cycle Clinic) performs internal exams, only if she is concerned that there could be a structural abnormality. The history, regular physical, and lab results are enough for her to recommend period management – if need be, she will order an abdominal ultrasound to check for the thickness of the uterine lining and the presence and/or absence of ovarian cysts.

1. CBC (complete blood count): This lets us know if you are anemic (low red blood cell count or low hemoglobin), and if you are making enough platelets which are the cells important for clot formation. This test also provides the total white blood cell count and what is called a differential. There are many types of white blood cells, and, basically, they are all involved in preventing or fighting infection. The differential provides a breakdown of the different types present in your blood, and may provide clues as to a potential viral or bacterial infection, a possible autoimmune process, etc.

2. Factor levels: Depending on your situation, family history, etc., these tests measure the amounts and/or function of some or all the clotting factors.

3. Platelet-specific studies: This test will be able to analyze how well your platelets actually work in terms of stickiness: THIS TEST MAY NEED TO BE PREARRANGED WITH THE SPECIAL COAGULATION LABORATORY, AND MAY NOT BE ABLE TO BE DONE ON YOUR FIRST VISIT DAY.

This test will provide information as to how well your platelets work to help form a clot and can be diagnostic for conditions such as Bernard-Soulier Syndrome or Glanzmann’s thrombasthenia.

4. Iron profile: This panel specifically measures how much iron is in your system overall. The serum iron is a measure of the actual circulating iron in your blood; the ferritin reflects how much iron is stored in your body for use.

5. Rule out pregnancy: Either bloodwork or urine

6. Blood type and crossmatch: If hemoglobin is <7g/d or a woman is experiencing symptoms of anemia such as excess fatigue, dizziness, shortness of breath, fainting… a transfusion may be necessary.

7. PT, aPTT: These are basic screening tests of the clotting process, measuring the length of time it takes for your blood to form a clot in the test tube. A low factor level may result in a prolonged PT (usually factor 7 issues) or PTT (think vWD, hemophilia, factor 11 deficiency) or prolongation of both tests (factors I (fibrinogen), II, V, X.)

8. Von Willebrand Disease panel: (VWF activity, VWF antigen, VWF Ristocetin Cofactor, Factor VIII activity, and VWF multimers) Workup will likely need to be repeated outside of the acute bleeding phase even when normal. Since vWD is the most common bleeding disorder worldwide, affecting men and women, unless your history suggests otherwise, this is often included in a basic workup.

9. Factor VII activity level: Although classified as a rare bleeding disorder, many providers – our program included - are identifying more and more women with low factor 7 and heavy menstrual bleeding. Discuss the need for this test with your provider.

10. TSH and thyroid hormone, particularly if cycles are irregular

11. If obese or with hirsutism and irregular cycles check: Hgb A1C, free/total testosterone, DHEAS, prolactin level (PCOS is a whole other article, best left to the endocrinologists or GYNs).

12. If sexually active, urine tests for gonorrhea or chlamydia infections.

In consultation with a hematologist there will be a panel of laboratory exams ordered.

Depending on your unique situation, other tests may be ordered which would be discussed at the time of your visit. A general evaluation which can be done easily and by any provider would likely include a CBC, differential, reticulocyte count (young red blood cells), platelet count, PT, aPTT, and iron studies.

How does a woman become iron deficient?

It’s a simple balance between blood (iron) loss and iron intake (usually from food.)

During a “normal” period, a woman may lose up to 35mg of iron each month. If you are experiencing heavy menstrual bleeding, the monthly iron loss is even greater. A serving of chicken only has about 2 mg of iron; beef has a little bit more. Dark chocolate actually has 7 mg of iron in a 3-ounce serving, but, sadly, we can’t exist on dark chocolate alone! Since only about 40% of the iron we eat is absorbed it is easy to see how quickly a woman with heavy menstrual bleeding can become iron deficient, even if she is eating an iron-rich supportive diet.

There are 3 stages in the development of iron deficiency anemia: in the first stage, the iron stores (ferritin) are depleted, as a person loses iron (blood), through menstrual bleeding but does not take in enough iron-rich foods to compensate for the loss. The body uses the stored iron to maintain the red cell level, or Hemoglobin. The serum iron is often still normal, as the stored iron is put to work. In the second stage the normal process of making red blood cells is impaired, and, in the third stage there is insufficient iron

to produce red blood cells. At this stage the hemoglobin has fallen, the red blood cells that are produced are smaller than normal because there isn’t enough iron, and anemia has occurred. As the red blood cell count continues to drop because the blood loss exceeds the intake, a person is likely to become symptomatic - pale, dizzy, fainting, rapid heart rate, etc.

Your provider may recommend oral iron supplements, intravenous iron infusions, or even a blood transfusion if your hemoglobin level has fallen to less than 7g (11g is generally normal for women) or you are very symptomatic. For women with heavy menstrual bleeding, identifying the cause and managing the blood loss is critical. A GYN provider can offer many options for management which do not need to rely on traditional birth control pills. One non-hormonal intervention which is used frequently in teens and adult women, is Tranexamic Acid (marketed under the brand name Lysteda®). This is a medication which stabilizes (or prevents the breakdown of) the clots which must form in the uterine lining to ultimately stop the period. It is effective in improving menstrual flow in women with heavy periods of any cause! Talk to your health care provider to see if this is right for you/your teen.

This article is intended to provide women with the basic tools to establish a meaningful conversation with their health care providers. A visit to a Hemophilia Treatment Center - even one which does not yet have a dedicated women’s program – can be invaluable. Eliminating or establishing a bleeding disorder as a cause for heavy menstrual bleeding will allow you and your providers to move forward.

If your HTC does not offer a women’s program, ask for a referral to a GYN at the same institution. Often there is easier communication between subspecialists in the same

space. If there is no HTC in your area, check out CDC. gov to identify the nearest HTC – reach out to the Nurse Coordinator to discuss the possibility of, at the least, a remote visit to begin a relationship which will be beneficial to you.

The role of the HTC for women with bleeding disorders is expanding rapidly. Even if the workup does not establish a bleeding diagnosis, that information will help your GYN or primary providers to explore other diagnoses with, hopefully, a manageable resolution for heavy menstrual bleeding and/or iron deficiency anemia.

Hemophilia (& Bleeding Disorders) Treatment Centers Directory

https://dbdgateway.cdc.gov/HTCDirSearch.aspx

Dr. Joanna Davis received her undergraduate degree from Barnard College of Columbia University and her MD from the Albert Einstein College of Medicine. After completing a residency in Pediatrics at Montefiore Hospital and Jackson Memorial Hospital, and a Fellowship in Pediatric Hematology/Oncology at the University of Miami, Dr. Davis joined the faculty at UM. She developed the Pediatric HTC in 1987 and has committed both the Adult and Pediatric programs to outreach and education. In addition, Dr. Davis authored a series of bilingual children's booklets on bleeding disorders, as well as other books and scientific articles, received several unrestricted educational grants, and raised bleeding disorder awareness to over 3,000 HCP’s. Identifying and treating women with bleeding disorders is a particular focus of her practice.

FACING CHANGE:

Kicking & Screaming… Accepting… Coping…

Growing

by Dr. Gary McClain, PhD

Changes are coming! Changes are coming!

So… what’s your first reaction when you read those three words? Let me guess. Oh wow! Enthusiasm? You just can’t wait? Or oh wow! Again? More? Why? Followed by some fear, frustration, disappointment, and lots of anxious thoughts. Maybe all the above?

Humans are wired to keep things as they are, to maintain whatever their day-to-day normal is, to avoid big gyrations. We fear being thrown off our game. If it’s not broken, why do I have to fix it?

One of the hardest parts about learning to live with a chronic health condition like a bleeding disorder is that it introduces change into your life, change that you didn’t ask for. A bleeding disorder is like having an uninvited houseguest that’s not going away. What is my guest going to demand this week? Well, let’s see. I suspect that one of your most important life lessons has been to accept that your bleeding disorder is part of your life, whether you have one yourself or are a family member.

Yes, change is part of life. The global pandemic that we have been dealing with has been a reminder that change comes whether we want it or not. But it has also taught us that we can weather change if we must. So, congratulations!

Now, the bleeding disorder community is seeing new changes coming in terms of treatment management. Opportunity? Potentially. But also change. So, if change presents opportunities, what’s the problem with embracing change? I can summarize the problem in one word: uncertainty. We humans don’t like change because it presents us with uncertainty. We want to know! Our desire to predict and control flies out the window. What’s next?

First, the Kicking and Screaming

Life is uncertain. You think you’re doing everything right. At least, you hope you are. But life gets in the way of our plans. An unexpected turn of events can change everything. An event that you didn’t expect, maybe didn’t even think would ever come your way. An event like an announcement of new ways to manage your bleeding disorder.

Nobody likes uncertainty. We want to know. We want answers. And when we’re faced with uncertainty, it’s only human nature to allow our imagination to go to town and fill in the gaps. With stories we tell ourselves to satisfy our inquiring minds. Sure, stories at least give us something to think about, and react to, in the absence of real information. But, on the other hand, those stories are usually worst-case scenarios that turn lack of information into misinformation. Are we trying to do ourselves a favor by preparing for the worst? It sure seems that way. But wow, we cause ourselves a lot of unnecessary anxiety in the process.

If you’re living with a bleeding disorder, or have a family member who is, you’re no stranger to uncertainty. Like when you’re watching to see if that slip and fall is going to cause a bleed. Wondering why your doctor didn’t get back to you on a question right away like they normally do. And now on the horizon, adjusting to a new regimen and anticipating how you might be affected.

Coming to Acceptance of Change

What can you do to at least adjust to change, even if you aren’t quite ready to embrace it with enthusiasm? Here are some ideas:

Accept life on life’s terms. When you accept where you are now in your life – and tell that critical voice to be quiet – you’re on your way to being more compassionate toward yourself. Along with freeing yourself up to start looking at what’s possible! How do you come to this place of acceptance? It starts with the messages you play inside of your head.

Give yourself some credit. You’re dealing with a lot. And there are days when the road can get pretty rocky. Remind yourself – every day – that you’re human and that you’re doing the best you can. Identify small and big victories and give yourself a pat on the back.

Accept that you are not in control. Life happens. And most of it happens regardless of our hopes and wishes. So, talk to yourself.

Gently but firmly say: “You can do a lot to take care of yourself. But you can’t control the outcome. And you can’t control what might come up along the way to throw you off

We humans don’t like change because it presents us with uncertainty.

course.” In other words, give up the battle before it starts. You’ll have a whole lot more energy left for much more productive thoughts and actions.

Ask yourself: What’s the worst that can happen? Vague concerns about your life can add up to big fears. So, take a step back and put some definition around your concerns. It might help to use a scale of one to ten, with one being “annoying” and ten being “catastrophic.” This will help you to have a more realistic view of the uncertainties in your life and also guide you in getting better prepared for potential outcomes. Don’t

Learning to Cope with Change

create potential catastrophes where they don’t need to exist. Be ready to do what you can to cope with those that do exist. I have adopted this phrase for myself, “I can only control what is; not what if."

Somehow you keep going. Because that’s just what you do. How? Because over time, you’ve come to acceptance. You can do it again. Accepting that life is uncertain, and change is just a part of life, does not mean giving up. It means making the decision to face life as it is, with an open heart.

We’ve all experienced change through the years in many as aspects of our lives, not just in our health care. I’m guessing in the process you’ve learned a lot about how to cope with change. Here are some of the coping techniques I use with my clients:

Review your foundation. What do you have to rely on in the event your boat gets rocked? Your strengths? Your support network? Your healthcare team? This is your foundation. Being aware of it will help keep you from feeling overwhelmed when you’re in a situation that feels threatening in some way. Review your foundation every time things feel uncertain and draw strength from it. This is a great way to build emotional muscle strength.

Consider how you have coped in the past. It might help to think back to situations in the past when the uncertainty of life weighed you down.

"I can only control what is; not what if."

Recount times in the past when your chronic condition threw you a curveball. What did you do to get yourself through? As the saying goes, “You have survived 100% of what has been thrown at you.” This is a great way to identify coping skills you might have forgotten you had. Dust them off and put them to good use. Avoid the rabbit hole. Our minds have a way of throwing scary, worst case scenario thoughts in our direction. These thoughts are automatic. And it is only human nature to grab onto these thoughts and use them to make ourselves feel worse. I call that chasing a thought down the rabbit hole. Getting stuck in the rabbit hole can lead to further resistance to change. Here’s what I say to my clients: You can choose which thoughts you want to hold onto and which thoughts you want to dismiss. Acknowledge negative and unproductive thoughts and then let them go on their way. You can’t control your thoughts, but you don’t have to let them control you.

Honor your emotions. But don’t let them lead you around by the nose. When uncertainty causes you to wander down the rabbit hole of unproductive, catastrophic thoughts, lots of emotions are going to come up. Feel your feelings, talk about your feelings. When you hold them in, they just get stronger. Letting them out clears the way for more rational thinking. Give yourself encouragement. If you’re living with a chronic condition, you’re dealing with a lot. The worst thing you can do is to constantly tear yourself down. The best thing you can do is to treat yourself with compassion. Talk back to the voice of fear and hopelessness with a confident, steady voice of encouragement. “You’re doing the best you can.” “You can’t control this, but you’ve got a lot of support.”

“You’ve been down this road, and you got through it. You can do it again.” Along with: “And who knows? Things might just get better!” Get support. The best way to get out of your own mind is by enlisting somebody else’s mind. Sit down with a family member or a friend and talk about what’s going on with you. Share your concerns, your fears… your stories. This helps in a couple of ways. First, you won’t feel so alone. And second, saying something out loud helps you to recognize what might make sense, and what might not. In other words, you may decide that the story – and the underlying “facts” –don’t really hold up. Wouldn’t that be a relief?

Finding Growth Through Change

We are all a work in progress. We are all in a constant state of growth. Change helps us to grow, to learn how to cope with the curveballs of life, and to be wiser. Here are some ideas to grow through facing change:

Stay focused on the here and now. What’s going well in your life? What are the responsibilities in your life that need your attention? Balance out the uncertainty with what you can count on – and control – in your life. In other words, pay attention!

Have a game plan. Work closely with your healthcare team to create your plan, ask for support when you feel you might wander off the path. Working the self-care plan is the best insurance you have in the face of life’s uncertainties. One day at a time. Having a plan in place to take the best care of yourself is going to increase your self-confidence.

Stay informed. If you need information, ask for it. If you can’t get the information you need, ask why and when. Do your own research and talk to your healthcare professionals about what you’ve learned. Communicate any symptoms or side effects that concern you. Do everything you can to advocate for yourself. Look for opportunities to attend conferences and family weekends. Knowledge is power! Flood the fears with facts!

Bottom Line: Be Open to Opportunity!

When you accept the aspects of your life that you don’t have control over, then you can focus your energy on where you do have control. You can stop fighting with yourself. And the way forward becomes a whole lot clearer.

How about a shift in perspective? You can look at change and the uncertainty that accompanies it with fear and trepidation and dig your feet in to avoid it. Or you can embrace change and see where it takes you. Sure, there are risks on both sides. But it has been my experience in my own life, and in the lives of my clients who are living with chronic conditions, giving up the battle and opening up to change can truly revolutionize your life. You have a choice!

Here’s a question that might help: When you’re faced with change, ask yourself a couple of questions: What’s the opportunity for a potential benefit, even a long-term benefit, if I accept this change and make the best of the situation? And what’s the best I can do to be the best I can be, for myself and for the people I care about? Listen closely for your answer.

Change is part of life; nothing stays the same forever. Life is uncertain, that’s what keeps it interesting. So, let’s all say it in unison: Open minds. Open hearts. What’s next?

Gary McClain, PhDGary McClain, PhD, is a therapist, patient advocate, and educator, specializing in helping clients deal with the emotional impact of chronic and life-threatening health conditions, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with each other and healthcare professionals, and to listen to their own inner voice as they make decisions about the future. His book, “The Power of Closure: Why We Need It, How to Get It, and When to Walk Away,” will be published by Tarcher Perigee in the spring of 2024. His website is: JustGotDiagnosed.com.

MASAC Makes Recommendation for Genotyping

by Janet Brewer, M.Ed

On July 6, 2022, the NHF Board of Directors approved NHF’s Medical and Scientific Advisory Council’s Document #247 Recommendations on Genotyping for Persons with Hemophilia.

From 2012-2018, My Life Our Future a collaborative partnership between the American Thrombosis and Hemostasis Network, Bioverativ (now Sanofi), Bloodworks and NHF with the generous support of more than 11,000 people with Hemophilia A and B to create a genotypic and phenotypic repository to advance the research and care for those affected by these rare disorders. In addition, at risk female relatives were included in this initiative from 2013-2017.

We learned much from this repository already that reflects

• <98% of those with hemophilia A/B have identified DNA changes in their factor gene

• Some individuals may have more than one DNA change

• More than one genotype may be detected in different affected family members

• In those born female at birth, as suspected, genotype is the most reliable method of diagnosis

In light of this information, MASAC document #273 recommends

• Individuals with hemophilia A or B undergo genotyping

• Affected male relatives (or individuals with a single X chromosome) undergo genotyping

• Females with more than one X chromosome at risk of inherited hemophilia-causing genetic change undergo genotyping REGARDLESS of FVIII or FIX levels

• Genotyping should be performed in a laboratory with experience in hemophilia genetics and results interpretation

This is an encouraging recommendation that could help advance care, treatment and predictors of birth planning, individualization of product types, inhibitor risk, and more. With this recommendation there is also the hope that it will be expanded to other factor disorders where levels do not always correlate with bleeding symptoms, such as in FVII deficiency.

ATHN (Source)

https://athn.org/what-we-do/national-projects/ mlof-research-repository.html

MASAC #273 recommendations

https://www.hemophilia.org/healthcare-professionals/ guidelines-on-care/masac-documents/masac-document-273recommendations-on-genotyping-for-persons-with-hemophilia

HABITS to Improve HEALTH

Your After

theWinter

MIND BODY CONNECTION

by: Megan Allen, RD, LD, CDCES

When the winter season comes to a close, you may find yourself craving your predictable schedule and routine again. Additionally, with a new year often comes a desire to make healthier choices for our body and mental health. Winter and the holidays typically include sugary treats, less water, increased alcohol, and less physical activity; leaving your body craving for more nutrient dense food choices, optimal hydration, and movement! Here are some simple priorities to help get your health on track after the long season.

Creating a Simple Plan

It can be very tempting to jump into a new diet, meal plan, or supplement regimen when starting a healthy lifestyle routine. It can be comforting to have all the “rules” and a grocery list set up and done for you. However, I encourage you to take a more relaxed approach to your healthy eating plan. While not the most trendy, foundational habits can make a big difference in your health and your energy levels during the day. They will also help you to expand into deeper health routines that you may struggle to maintain without this baseline.

These habits include:

1. 64 oz plain water per day (ideally 16 oz before your morning coffee),

2. 3-4 cups of vegetables per day, and

3. a source of protein at each meal, especially breakfast

I choose these three foundational habits because getting adequate hydration can help you feel energetic during the day, while higher amounts of fiber from vegetables can improve your digestion and

reduce bloating after the winter. Protein helps you stay full longer between meals and will contribute to minimizing cravings for less healthy options.

While these habits are a great place to start, a specific plan is still needed to ensure success. I always recommended reverse engineering the process of implementing habits into your day. Ask yourself:

“What do I need to accomplish first in order for me to achieve this goal easier?” Planning the preparation process can be the biggest difference maker on managing time and ease of access to healthy food. Do you need to prepare hard boiled eggs on a Sunday, so they are available to eat throughout the week? Or maybe you need to add Greek yogurt, turkey bacon, protein shakes, or cottage cheese to your next grocery list so you have quick, enjoyable options on hand to choose from. Set simple, impactful goals that will ensure an easier transition during the busier times of your week.

Make Things Enjoyable

Life is too short to spend time doing things you don’t enjoy. This is especially true when it comes to your eating habits! If the changes you are making to your diet is something you can’t see yourself still doing a month, a year, or ten years from now, consider changing your approach to achieving that goal. So how do you start making healthier choices while still enjoying yourself?

Start by brainstorming a list of your favorite meals, snacks, beverages, and even restaurant meals. It does not matter if you would label them “healthy” or not. Now, if there’s already some healthier choices on that list then feel free to enjoy them. If there are some less nutritious options on the list, still keep them in your diet but have a plan for enjoying them in smaller portions or make a healthier version. For example, do you love blueberry bagels for breakfast? Change to a whole grain bagel with light cream cheese and fresh blueberries. If you enjoy fried chicken for dinner, try swapping it for chicken breaded with whole wheat bread crumbs and baked in the oven. Do you find yourself having ice cream after dinner in the evening? While at the grocery store, skip the larger tub and try buying individual ice cream bars which help makes managing portion sizes easier.

Let’s talk about exercise! If you want to exercise multiple days of the week but you hate going to the gym because it takes too much time away from your family and other responsibilities, then reevaluate how you will meet your exercise goal at home. Consider online exercise programs that offer free trials to see if you like it before subscribing! Most programs will give you one week free before they bill you for the full program. You can also try “walk at home” YouTube videos. These have been around for a while now, but they are essentially guided step aerobics videos where the work effort equates to walking a long distance. Workouts that only require your

3It is perfectly normal to not enjoy the first thing you try in regards to exercise or healthy eating. Remember, you are not failing at your goal, you simply have not found the right strategy that’s enjoyable and sustainable. When you have long term goals for your health it is always worth the effort to experiment and find what you love! This is the best way to find sustainable change with your health.

Reframe Your Mindset

When it comes to making healthier choices, you can make all the plans, buy all the healthy foods, and choose a new workout plan, but making the decision to eat those foods and do the workout every day comes down to your mindset and the relationship between health and body. You will not always feel motivated to do the things you need to do to improve your health and that’s completely normal. This is where discipline and a positive, enjoyable relationship with food, exercise, and your body will help you continue with your goals.

So, what does this look like in real life, and how do you achieve a changed mindset? We are human, we are not always going to be in the mood to complete that tough workout. Usually we talk ourselves out of doing difficult things, but sometimes we just need to start! Training yourself to always start a workout regardless of how you feel, can help create that disciple which is crucial to building habits that stay in our lives. Even if the workout only lasts 15 minutes before you need to toss in the towel, that is 15 more than what you would have done if you took the other route. It may also help prevent the “all or nothing” mentality we commonly have. I.e. - because we skipped one thing or failed at something, we give up on all our other values and goals the rest of the day. Avoiding this trap can attribute to a positive self-view.

Congratulate yourself for starting and recognize that every little bit matters. I always recommend having that “emergency” exercise. The one workout you can always do no matter what changed during the day (and you have no excuse for not doing.) For me, this is a quick 15-minute stretch or yoga. It keeps me moving, allows me to feel some accomplishment, and can help reduce my stress on those days the world feels extra challenging.

Struggling with a craving for something less healthy and nutritious? Instead of giving into the craving right away, delay it by first having a healthy meal of protein, vegetables, and high fiber carbohydrates to satisfy your physical hunger. Before giving your body what it wants, try to pause, take stock, and try a balanced meal, some water, or even 10 minutes of movement.

It’s also important to keep in mind that social occasions, holidays, and changes in schedules are bound to happen and can make it difficult to stick with our original plans. It’s tempting to throw in the towel when you have plans for a healthy meal but then a friend asks you to dinner. Instead of waiting until tomorrow to get back on track, review your options and consider how you can make this meal even 1% better. The meal may not be as healthy as what you originally planned, but even small decisions you make will help to build confidence in the future. Be firm in your goal but reasonably flexible in the approach.

I hope you will keep these three priorities in mind as springtime approaches. As you work through the process, you will be happily surprised how your health changes in 1 month, 6 months, or even a year down the road. Start today!

Find small changes that you can implement to help guide your health and body toward the vision of who you want to be. Just remember to enjoy what you are doing; it will make those important habits easier to incorporate into your busy life.

Megan Allen is a Registered Dietitian and Diabetes Care and Education Specialist who works one-onone with clients to help them set personalized nutrition goals to improve their health. She became a Dietitian because she believes food is a source of nourishment for disease prevention and treatment, but also enjoyment for your life as well. Food should make you feel happy and energetic, never guilty or stressed. When working with clients one-on-one she helps them set enjoyable, behavior-based goals to improve their health beyond hitting a certain target on the scale.

nSpiration through Education

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Middleboro, MA 02346

CHES Mission

To Inspire awareness and selfreliance for patients with chronic health conditions, their families, and their communities.

Editors in Chief

Janet Brewer, M.Ed

Eric Lowe

Editor

Janet Brewer, M.Ed

Publication Designer

Eric Lowe

Contributing Writers

Megan Allen, RD, LD, CDCES

Janet Brewer, M.Ed

Joanna Davis, MD

Elizabeth Garcia-Robles

Eric Lowe

Gary McClain, PhD

Lavang Vu

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