HARP: The Hemophilia A Research Program l Rebalancing Agents on the Horizon l We Need You: The Future of Care for Females with Bleeding Disorders l New CHES Program: InhibitCon! l Teaching Your Children to be Independent l And more!
LifeLines for HealthSM Disclaimers
The views and opinions of our writers are not a reflection of CHES Foundation, Inc. or its sponsors.
This newsletter is designed to provide a forum for community members to express their views from an open and honest platform. It is meant to provide a sharing of knowledge and experience to help one another. Nothing in this newsletter is meant to replace the advice of your HTC, medical professional team or insurance provider. You are always urged to seek the opinion of a healthcare professional for treatment and your specific insurance provider for information.
We take your privacy very seriously. We would never disclose your personal health information without your express written consent. We would never sell nor make available our secure database to anyone. Articles and pictures may not be reproduced, published, and/or placed on websites without the express written permission of CHES.
In every publication of LifeLines for HealthSM, we will provide links to other websites that are not owned or controlled by CHES or its sponsors. We cannot be responsible for privacy practices of other website owners, nor can we be responsible for the accuracy of the information provided.
Letter From the Editors
Welcome!
2024 has been an amazing year of serving YOU-our community! Every program opportunity where we are blessed to see you recharges our batteries and renews our committment to providing support to the underserved segments of this community. Be sure to read our participants' stories in Community Chatter and what it means to attend our programs.
Our bi-weekly Digital Digest is celebrating a oneyear anniversary. Director of Advocacy and Outreach, Heather Case has revamped the format to include great stories, and new developments in the rapidly evolving world of bleeding disorders. If you don’t receive it, you can sign up here ches.education/ communications-profile-form. This print publication will be published annually. Don’t forget to access our archives at ches.education/newsletter
CHES Foundation introduced InhibitCon this year, a national educational event offered free of charge to the inhibitor community to bring back the education and support previously provided by the Inhibitor Summits. The event was an overwhelming success, and we can’t wait for next year! We have launched our Hermanas de Sangre campaign that supports Latina women with bleeding disorders, focused on women with Hemophilia A & B, as part of our consistent support of women with bleeding disorders since 2016. Stay tuned for videos sharing personal stories and webinars presented entirely in Spanish by Subject Matter Experts at ches.education/hermanas-desangre-campaign
Do you know CHES is now CHES Foundation? We could never have done it without you-as a matter of fact-you suggested it! Want to help? Please consider making a taxdeductible contribution at https://www.paypal.com/us/ fundraiser/charity/3831253
Keep an eye on our website, www.ches.foundation for resources and links to studies and programs. In the everchanging and challenging medical community, it is more important than ever to be a well- educated advocate. Like us on Facebook, follow us on Instagram or LinkedIn to keep up to date and connected to our programs, resources, webinars, and services. Don’t forget to share with friends.
We have a lot to share in this issue and hope that you find an article that resonates with you. 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 your fall was glorious and you can use the winter months to rest and rejuvenate. We recognize the holidays are also a time of stress; so, if you are struggling, please reach out. We are here. Be safe, be well and we look forward to seeing you again in 2025!
- Janet Brewer & Eric Lowe
jbrewer@CHES.foundation elowe@CHES.foundation
“The purpose of human life is to serve, and to show compassion and the will to help others”
-Albert Schweitze
FEATURE
15 I Bleeding Disorders & Posttramatic Stress Disorder
Posttraumatic Stress Disorder (PTSD) is increasingly recognized in the bleeding disorder community, with studies showing a significant link between chronic conditions like hemophilia and mental health struggles. Debbie de la Riva, LPC explores how PTSD manifests in those living with bleeding disorders, its prevalence, and effective ways to manage it.
BLOODLINES
4 I HARP: The Hemophilia A Research Program
HARP is a groundbreaking national study dedicated to understanding how hemophilia A impacts both mothers and babies. HARP aims to answer critical questions about bleeding risks during childbirth and why some babies with severe hemophilia A develop inhibitors while others do not.
5 I Rebalancing Agents on the Horizon
For those in the inhibitor community, the promise of new therapies brings renewed hope, especially for hemophilia B patients with inhibitors. Rebalancing therapies that increase thrombin by lowering anticoagulants are showing promise, but understanding their mechanisms is key.
7 I We Need You: The Future of Care for Females with Bleeding Disorders
Women with bleeding disorders, often overlooked in diagnosis and treatment, are making strides, but there’s still much work to do. From heavy periods and iron deficiency to postpartum hemorrhage, the signs are often missed or ignored. Dr. Joanna Davis advocates for how we can create a community of empowered women who stand up for their health and the next generation.
COMMUNITY CHATTER
11 I 2024 CHES Programs: InhibitCon
It can be incredibly frustrating when medical professionals question your symptoms or dismiss your struggles, which sums up the life of Shellye Horowitz, a woman with hemophilia A. But through CHES’s transformative experience of InhibitCon, she finally found a community that truly understands the unique challenges women like her face. InhibitCon was a turning point for Shellye, helping her navigate a treatment plan with confidence and clarity.
13 I 2024 CHES Programs: After the Shock
Although familiar with hemophilia, nothing could have prepared the Hall family when their youngest son, Maverick developed an inhibitor. Devastated, they found a lifeline, the After the Shock - Inhibitor Family Camp where they met families who truly understood their struggles, shared valuable insights, and gave new hope.
WHAT’S NEW
21 I Health Insurance: What's New in Healthcare 2025
Choosing a health plan is never easy, but it can be especially difficult for families with rare, chronic conditions. Expert Michelle Rice explains the various plans, coverage, necessary documents, and terms. If you miss the open enrollment period, there are still options. Stay informed about upcoming changes!
FAMILY MATTERS
25 I Teaching Your Children to be Independent: Finding a Delicate Balance
Dr. Gary McClain explains the delicate balance between empowering your child to manage their own bleeding disorder while managing your own worries. Learn how to face the “what-ifs,” build your own stress tolerance, and give your child the tools they need to make decisions and grow.
WHAT's the PLAN?
31 I What is Self-Advocacy?
From challenging medical decisions to ensuring educational accommodations are met, Lisa Cosseboom, M.Ed, C.A.G.S. explores the importance of advocating for your child’s rights and needs. Learn how to confidently request evaluations, insist on necessary services, and teach your child to speak up for themselves, because self-advocacy isn't just a skill, it's a lifeline for their future.
2025Education Programs
Virtual Programming
We will host virtual sessions periodically throughout 2025. To receive up-to-date info on our virtual programs, live experiences, and other resources, use the QR code or link below.
To receive info on additional upcoming programs and webinars visit: https://ches.education/communications-profile-form
Webinar Recordings
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
programs
June 20-23, 2025
Camp Zeke - Lakewood, PA
Inhibitor Conference for all ages
April 4-6, 2025 Charlotte, NC & October 2-5, 2025 Portland, OR
Women with Bleeding Disorders Conference for ages 12+
August 8-10, 2025 in partnership with Utah Hemophilia Foundation Salt Lake, UT
November 14-16, 2025 Tampa Marriott Airport - Florida
HARP
TBy: G Shellye Horowitz
The Hemophilia A Research Program
he Hemophilia A Research Program (HARP) is a new national study looking to learn about how hemophilia A affects mothers and babies. HARP is hoping to help answer two important questions:
• Why a pregnant person who has a hemophilia-causing DNA change (sometimes called a mutation, or genotype) is more likely to have serious bleeding with childbirth than a pregnant person without a DNA change.
• Why some babies born with severe hemophilia A go on to make inhibitors (immune responses to coagulation factor VIII), while others do not.
The point of the HARP is to learn more about the factors that cause bleeding in moms and that cause inhibitors to form in children with severe hemophilia A. The HARP begins by following people during pregnancy and then continues to follow both moms and their babies through their first years. The study observes what happens as moms and their babies live their lives, collecting samples and data. This includes life events, illnesses, treatments for hemophilia, tracking who is bleeding excessively, and identifying who makes an inhibitor. The program also will make a research resource so that future scientists can study other topics important to people and families living with hemophilia.
The people working in the HARP are committed to listen to what’s important to the people who live with bleeding disorders and to give back to the community throughout the research. The hope is that the data gathered over the years of the HARP will help scientists and physicians understand more about female bleeding and inhibitor risks so that there can be better tests and more effective individualized treatment in the future.
HARP hopes to include people of various and diverse backgrounds that reflect the hemophilia population. To learn more about the HARP, please visit https://harpf8.org/
VS
Horizon REBALANCING AGENTS on the
Those of us in the inhibitor community who attended the Inhibitor Summits have been hearing about future therapies that would potentially provide more efficacious treatment for years. As with all product development, the process to get to market is long, and not always successful. Product safety remains a priority, especially for our bleeding disorder community. These new therapies, however, bring hope to the inhibitor community; especially for those with hemophilia B and an inhibitor who have very few options for effective treatment.
Rebalancing therapies that increase thrombin by lowering anticoagulants are within reach. There is a lot to know and understand about their mechanism of action.
• Familiarize yourself with the vocabulary
• Take advantage of webinars or educational resources as they present themselves
• And ask your healthcare professional (HCP) LOTS of questions
Product choice is ultimately a decision made between you/your child and your HCP. We know well in this community, that not every product works the same for everyone, and if you know one inhibitor patient-you know ONE inhibitor patient.
CHES Foundation looks forward to sharing more information with the inhibitor community as these products come to market. As always, we never recommend any treatment or products, but are tireless advocates of sharing educational resources to assist you in making choices with your healthcare team.
The Future of Care for FEMALES with Bleeding Disorders
s the year spins all too quickly into the end of 2024, this is as good a time for reflection and resolution as is January 1. Time, as the new school year looms large, to make lists, think about what our kids (of all ages) need for a successful semester ---have they outgrown uniforms, shoes, backpacks? Have they matured (or at least grown/changed) so that they don’t want Disney logos, or last year’s favorite sports team? Do they need to get used to a new school, a new transportation route, a new activity or class?
As parents – especially mothers – this time of year (well, ANY time of year) is time to pay close (well, CLOSER) attention to what our kids and families need. But --- what about moms/sisters/wives/aunts/grandmas? What do THEY/WE need? Shouldn’t this time of year also provide us the ability to focus a bit more on ourselves?
And, while creating “me time” for that visit to the salon, or the mall, or the library is critical, I am specifically referencing the need for the women in our community to have the awareness and knowledge about their bleeding disorders to develop the voice to be heard, stand up for their needs, and make things happen.
The science of bleeding disorders has come a long way, accelerating over the past 10 years. Gene therapy, once a daydream, is a reality. Subcutaneous prophylaxis is possible and effective for so many. Increasing numbers of our infants, children and adults are leading “normal” lives – playing sports, attending colleges, pretty much “like everyone else”. (And, since every human being has some medical issue, why is having a manageable bleeding disorder any more or less devastating/embarrassing than having asthma or diabetes?)
But women’s bleeding issues require as much attention – especially now! And we – the moms, the aunts, the teens – must be the agents of change.
There is still a lack of awareness on the part of many in the medical community that women can and do have bleeding disorders --- and that some of the most common issues that “force” a woman to go to the doctor (like heavy periods and iron deficiency anemia – aka fatigue, paleness, dizziness, shortness of breath) are explainable by the recognition of a bleeding disorder. This recognition results in appropriate management and stronger and healthier women.
It's very easy (and reassuring) to keep reiterating: “Everyone in my family bruises easily, has nosebleeds, has heavy periods” so this is normal. But we are taking care of children or spouses with a bleeding disorder. What’s normal?? We need to acknowledge that WE may also have a bleeding disorder and must seek care.
FAST FACTS:
• 1 out of every 6 mild hemophiliacs are actually women.
• Women can have joint bleeds.
• In some studies, 50% of women/girls with heavy periods, were found to have a bleeding disorder.
• 15 – 20 % of women with iron deficiency actually have a bleeding disorder.
• Pregnancy or birth control pills can normalize the clotting system in women with Hemophilia A and type I vWD --- so everything is fine, until you’re home and start to bleed heavily, because around 2 -4 days after delivery, the hormones that kept the factor levels high, drop out and the bleeding tendency becomes a reality (postpartum hemorrhage).
• There can be a delay of months to years in identifying a female with a bleeding disorder, when compared with a boy/male with similar issues.
What can women do?
Become familiar with symptoms which can point to a bleeding tendency and insist that your HCP listen and act! (And, as with everything female, reproductive bleeding is a hallmark.)
Pay attention to:
• Periods that last at least 7 days
• Periods that require a change in sanitary product every 1-2 hours for a few (or all) of the days
• Soaking through pads/doubling up of pads and flooding clothing or bedding
• Passing grape-sized clots
• History of recurrent nosebleeds – particularly nosebleeds that started as an infant or toddler
• Unexplained bruising in odd places (chest, back, hips) without trauma
• Fatigue, shortness of breath, pallor
• Postoperative bleeding that was worrisome to health care providers --- raising the need for a transfusion, or requiring a return to the operating room
Track your periods: There are many good apps out there, if you’re technologically savvy. Otherwise, there’s the good old-fashioned calendar page. Pay attention to patterns of interval, duration, intensity. Are you using aspirin or Advil? If so, how often? How much?
What supplements are you taking? Excessive intake of garlic, ginger, ginseng can actually cause a coagulation defect and bleeding.
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 Hemophilia Treatment Center in 1987 and has committed both the Adult and Pediatric programs to outreach and education. Dr. Davis has raised awareness and education for thousands through various methods, such as, bilingual children’s booklets, book chapters, scientific articles, and educational grants. Identifying and treating women with bleeding disorders is a particular focus of her practice.
How to find a knowledgeable and supportive provider, clinic, and/or team
There are about 150 HTCs in the United States. Go to www.cdc.gov – you will find a listing of each one including contact information for the HTC team.
Specifically inquire if your HTC has either a dedicated women’s program in conjunction with OB/GYN or works closely with a GYN provider who has an interest in women with bleeding disorders. If not, speak directly with your GYN and provide these facts and resources.
Look up and contact:
• CHES Foundation-LadyBugs/SHEmophilia/ Hermanas de Sangre https://ches.education/intro
• Let’s Talk Period: check out https://letstalkperiod. ca/self-bat/eng/ for a simple bleeding assessment tool which will let you know if you or your relatives have a pattern suggestive of a bleeding disorder
• National Bleeding Disorders Foundation (formerly NHF) https://www.bleeding.org/
• The Foundation for Women and Girls with Blood Disorders https://www.fwgbd.org/
• World Federation of Hemophilia https://wfh.org/
All the forementioned organizations and many others offer excellent resources and education for women’s issues.
• Attend chapter and advocacy meetings.
• Inquire about “meeting” other women --- we can serve as our own mentors!
• Take the time for yourself to question, to learn, to act.
• Work with your HTC team to encourage the development or clinical studies focusing on or including women.
At the University of Miami, we have had and continue to have a study evaluating the joints of women between the ages of 18 – 50 who have a diagnosed bleeding disorder. Times change.
Information changes.
The HTC network is and has been reaching out to educate providers and practitioners, but we need to be in partnership with you ---- your words, your experiences, your voices!!
How can we help each other, now and for the next generations?
CHES 2024 Programs in Review
Among the 4 in-person patient community educational events provided by CHES Foundation in 2024, we are honored to share participant testimonials of the 2 inhibitor-focused programs.
By: G Shellye Horowitz
August 2-4, 2024
Marriott Airport - Houston, TX
As a woman with hemophilia A, I often struggle to figure out where I fit. Many women relate, which is why CHES’s Ladybugs program is so necessary and essential. Ladybugs was not the only CHES program I needed. In August 2024 I was given the gift of attending InhibitCon. I am thankful for all I learned and the immediate connections and support from the first night.
Many steps of my journey included medical professionals who were dismissive, questioning bleeding symptoms instead of addressing them with curiosity and investigation. It was a fight to be heard, believed, and treated. Being acknowledged as a woman with a bleeding disorder was key. I didn’t realize there would be more struggles.
In 2018 I needed a hysterectomy and pelvic floor reconstruction - an 8 hour surgery. Before surgery I asked my HTC for a pharmacokinetic (PK) study as I knew the factor I used was not working right. I was told “A PK study is a waste of expensive medication on a woman not on prophylaxis.” I protested, “My bleeds don’t respond to factor!” They said, “If factor doesn’t help, you’re not bleeding.”
I made it through surgery. When the stitches dissolved, I poured blood. 40+ infusions totaling 60,000 units of factor over 30 days stopped the bleeding. I switched HTCs.
My new hematologist put me on prophylaxis, as I was bleeding a lot. It still wasn’t working. I requested a PK study, again. This HTC agreed. The expected half-life on the product I was taking was 12 hours, mine was 4.6. I was right! I switched to a product that increased my half-life.
A few years later my hematologist retired. The new hematologist questioned my many breakthrough bleeds. After months of being doubted, I requested another PK study. My peak had fallen by 25% and my half-life reduced by 5 hours. The time spent over 50% factor after infusion had decreased from 18 to 8 hours. No wonder I was bleeding!
Other than a single positive Bethesda, no explanation was found, which was scary and frustrating. I had multiple bleeds needing dosing to 100% every 12 hours to stop, which wasn’t normal. The falling peaks and half-lives also weren’t normal. I was told it may be a transient inhibitor not being caught by testing. Something was wrong.
As I continued to attend hemophilia conferences, I felt alone. No one could relate or offer much advice for diminishing factor effectiveness.
CHES’s InhibitCon gave me an opportunity to connect with providers and community members who understand what it means to struggle with factor that doesn’t work as expected and the need to figure out new plans. I met people who have similar struggles with factor half-lives. They welcomed me.
For a year I was frozen - I struggled to choose my next treatment step. I was offered new therapies, but no explanations why they would be better. InhibitCon educated me about the immune system and factor products. InhibitCon helped me find a plan I feel comfortable with, and I have a scientific explanation why!
I have been to many hemophilia conferences. InhibitCon was one of the top conferences I have ever attended because it truly addressed my current struggles with factor efficiency. I was offered expert input and advice that resulted in immediate practical application moving forward. I am so grateful for this exceptional learning opportunity and to the staff at CHES for filling a critical need for education and support for the inhibitor community.
More info on InhibitCon https://ches.education/inhibitcon
In collaboration with:
Made possible through the support of:
DIAMOND SILVER
We first learned that our son Maverick had developed inhibitors after spending the first few months of his life in the hospital. We were devastated by the news and after hearing that word, we were in total shock! How could this happen? Why us? But most importantly why him? It was such a scary and frightening time in our lives, and we were so lost! We thought we were already pros at dealing with the hemophilia part since it ran in my family and my middle son had already been diagnosed as having severe hemophilia A.
That’s when I set out on a mission to start learning anything and everything I could about what life with an inhibitor was about to start looking like for us. We were in uncharted territory as no two cases I had found were the same. All I knew is that it had never ran in my family previously, so we were clueless when it came to the inhibitor aspect. I started to read stories where some kids beat them, while some never could. We hardly knew any
by Ashley Hall
June 23-26,
Camp Zeke - Lakewood, PA
families with young kids, and I just remember feeling so scared and confused with so many questions still left unanswered. That’s when someone messaged me one day telling me about CHES Foundation, Inc and invited us to attend their camp, After the Shock, so that we could meet families just like ours going through some of the exact same things! That someone also just so happened to take me under her wing and helped teach me everything she knew about inhibitors and treated us like family from the start! I will forever be grateful for Mrs. Janet! She is and forever will be my inhibitor mama!!
We jumped at the opportunity and I’m so glad we did! CHES provided us with a safe space to vent about medical issues going on in our lives, yet we were also able to get much needed clarity and guidance by other families going through similar treatments. We bonded instantly with other families and my kids were able to meet other kids going through very similar situations! They were able to have a weekend of some type of normalcy where they could laugh and play and run free knowing we had the proper help on standby if anything were to occur.
The After the Shock Inhibitor Family camp provided onsite nurses, industry representatives who were available to answer any questions they could about certain medications and most importantly we had HELP! We had a personal helper called a Pal who had inhibitors himself so we knew we could relax and
well worth it! The educational classes were spot on and just what my husband and I needed to help us make more educated decisions in our future! This is a smaller community that is much needed to help give us the mental and physical support we desperately needed! Nobody should fight inhibitors alone - an army of people who understand exactly what you’re going through makes you feel like you can conquer anything! Especially these pesky inhibitors!
be stress free knowing they knew how to help in case an injury occurred. It was a weekend of fun and fellowship and most importantly education. My kids loved fishing, archery, and we all enjoyed the cooking class together. Although Maverick at some point seemed to be enjoying eating the food more than the actual cooking part! Just seeing our kids run around with other kids like them made the journey up to Camp Zeke in Pennsylvania for the After the Shock camp
We made friendships that turned into family and bonds that will last a lifetime. Whenever we attend a new program and learn something new that we didn’t know before, that is always a win in our book. We have been fighting Maverick’s inhibitor through every-otherday Immune Tolerance Induction treatment for the past year and a half, and we’re currently still fighting. Although everyday seems like a challenge, we remain hopeful and can’t wait until we get the chance to reunite with our inhibitor families once again!
Made possible through the support of:
More info on After the Shock https://ches.education/after-the-shock
Life with a bleeding disorder can prove to be challenging both physically and emotionally. There are unpredictable bleeding episodes, pain, recovery time, doctor appointments, financial burden, and psychosocial issues. These stressors combined with possible medical trauma can create the perfect storm for developing posttraumatic stress disorder (PTSD). This article is meant to arm you with vital information regarding PTSD, its prevalence in our community, and ways to manage it.
Posttraumatic Stress
Disorder is a mental health disorder listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). This manual is used by mental health professionals to diagnosis individuals with mental disorders based on their symptoms. PTSD was officially recognized by the American Psychological Association in 1980 and has gone through many revisions leading to our current understanding of it. Many people associate PTSD as a condition unique to veterans. That is because the concept originated after World War I as means of understanding the common symptoms associated with war veterans. It was originally thought to be the result of bombardment and fighting. We now know that many types of traumas can be a triggering event for developing PTSD.
According to the National Center for PTSD,
to be diagnosed as having this condition, individuals must meet the following criteria:
Criteria 1 Exposure to actual or threatened death, serious injury or sexual violation. The exposure must result from one or more of the following scenarios, in which the individual:
• directly experiences the traumatic event
• witnesses the traumatic event in person
• learns that the traumatic event occurred to a close family member or close friend
• experiences first-hand repeated or extreme exposure to aversive details of the traumatic event
Criteria 2 Trauma is re-experienced (1 required)
• Unwanted memories
• Nightmares
• Flashback
• Emotional distress after exposure to traumatic reminders
• Physical reactivity after exposure to traumatic reminders
Criteria 3 Avoidance of Trauma-Related Stimuli (1 required)
• Trauma-related thoughts or feelings
• Trauma-related reminders
Criteria 4 Negative thoughts or feelings that began or worsened after the trauma (2 required)
• Inability to recall key features of the trauma
• Overly negative thoughts and assumptions about oneself or the world
• Exaggerated blame of self or others for causing the trauma
• Negative mood
• Decreased interest in activities
• Feeling isolated
• Difficulty experiencing positive moods
Criteria 5 Trauma-related arousal and reactivity that began or worsened after the trauma (2)
Criteria 8 Symptoms are not due to the physiological result of another medical condition, medication, drugs, or alcohol.
It is important to note that not all people who experience a trauma will go on to develop PTSD. In fact, according to the Adverse Childhood Experiences study, sixty percent (60%) of the US population have experienced at least one traumatic experience in their childhood and six percent (6%) of individuals will have PTSD at some point in their life.
However, having a chronic condition is a known risk factor in developing PTSD
According to the Posttraumatic Stress Disorder and Posttraumatic Stress Symptoms Among Adults with Hemophilia A and B, published in September 2023, it was discovered that 11.8% of the 178 male participants with hemophilia met the criteria of PTSD.
178 Males with Hemophilia A&B
Males with Hemophilia
11.8% met criteria of PTSD
It was also noted that having HIV, hepatitis, arthropathy and inhibitors were associated with a higher odds of screening positive for PTSD. Amanda Stahl, LICSW is a clinical social worker at the Boston Hemophilia Center and one of the researchers of the study who has been sharing the results with the community. When asked what feedback she is receiving she said “The results have not been that surprising to most social workers who have witnessed their patients’ various trauma symptoms, especially avoidance – like not showing up to appointments or forgetting a dose of their medication. If anything, this study has contextualized their symptoms, and helped them realize they are not alone.” She also wanted to emphasis that PTSD can show up differently in hemophilia. Whereas, in general PTSD, the trauma can result from something that happened outside of you. In hemophilia, the trauma results from events going inside of you such as bleeding episodes and pain. Secondly, the avoidance portion of PTSD can have serious negative impact on a person’s physical health because it can take the form of noncompliance with treatment.
Fortunately, PTSD is a treatable condition and we currently have reliable means of diagnosing it. A mental health professional will ask you to take a screening for PTSD and complete a biopsychosocial assessment with you. There are a number of ways to treat PTSD including:
• Cognitive Behavioral Therapy
• Prolonged Exposure Therapy
• Eye Movement Desensitization and Reprocessing (EMDR)
• Child Play Therapy
Other interesting outcomes include:
• 56.7% of the participants reported experiencing a traumatic event
• 82.1% of them reported the trauma was related to a noninfectious medical event such as a bleed or injury
• 47.5% said the trauma was related to a psychosocial issue such as being bullied or missing an important event
• Relaxation Training
• Art Therapy
• Medication to treat underlying anxiety and/or depression
It is important to approach PTSD just as you do your bleeding disorder. You need to get informed, do your research, seek support, and advocate for yourself. Your HTC is a great place to start. They understand the importance of both your physical and mental health and are invested in the quality of your life.
Hemophilia
Resou
The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma by Bessel van der Kolk MD
The PTSD Workbook: Simple, Effective Techniques for Overcoming Traumatic Stress Symptom by Mary
Beth Williams,
PhD Soili Poijula, PhD
The PTSD Workbook for Teens: Simple, Effective Skills for Healing Trauma by Libbi Palmer, PSYD
To get informed about a local therapist: www.psychologytoday.com
Debbie de la Riva, LPC, mother of an adult son with hemophilia, served as ED of the Lone Star Chapter of the National Bleeding Disorders Foundation (NBDF) and participated in working groups for both NBDF and the Hemophilia Federation of America (HFA). She is a licensed mental health counselor and certified as a Mental Health First Aid Instructor. In 2018, Debbbie founded Mental Health Matters Too (MHMT) and has become a recognized expert on the mental health aspects of living with a bleeding disorder. MHMT is dedicated to raising awareness and knowledge of common mental health issues, normalizing the conversation about them, and helping community members find resources for mental health information, care, and support.
Debbie’s current projects include facilitating the talkback portion of chapter’s screenings of Believe Limited’s film Let’s Talk: Mental Health, serving as an advisor for the HOPE Board of Directors, and serving as an Ambassador for Save One Life.
HEALTH INSURANC
What's New in Healthcare
Choosing a health plan can be difficult for anyone. For those living with a rare/chronic condition it can be critical to both their health and financial well-being. Being educated about changes in the healthcare coverage landscape and how to evaluate your health coverage options is key to making the RIGHT choice for you and your family.
There are a series of steps you can follow that can help to make the process easier. The first step is to explore your coverage options: for example, do you qualify for Medicaid or Medicare? Does your or your spouse’s employer offer health care coverage? When can you enroll? What is required to complete enrollment?
Regardless of where or how you get your coverage, it is important that you take time to review all options. Next, identify what each plan covers to ensure you and your family’s needs are met.
Here are a few tips to help make the review process easier:
• Prepare a medical history sheet for each member of your family that includes the following information:
• List of all current medications and dosages
• Names of your preferred clinicians, specialists, pharmacies and hospitals
• Emergency contact information
• List of allergies
• Collect from your HR representative, insurance agent, or Marketplace the following documents for each plan:
• Summary of Benefits & Coverage
• Drug Formulary/Preferred Drug List and/or Specialty Drug List
• Provider Network Booklet
• You now have what you need to start the review process. Be sure to pay special attention to key words like those listed below. These terms may lead to access to care challenges if they apply to the care you need.
• Prior Authorization
• Out of Pocket Costs, including deductible
• Out of Network Benefits (if any)
• Accumulator Adjustor or Accumulator Maximizer
• Referral required
by Michelle Rice
IMPORTANT NOTE: If you miss the open enrollment deadline for insurance coverage you MAY still have a few options on the next page.
If you miss the open enrollment deadline for insurance coverage you MAY still have a few options:
1) Special Enrollment Period (SEP):
You may qualify for a Special Enrollment Period if you experience a qualifying life event, such as:
• Marriage or divorce
• Birth or adoption of a child
• Loss of other health coverage (e.g., job loss or losing Medicaid eligibility)
• Moving to a new area with different health plan options
• Changes in household income that affect eligibility for coverage
• Becoming a U.S. citizen or gaining lawful presence
If you qualify, you can enroll in or change your health insurance outside the regular enrollment period.
2) Medicaid or CHIP (Children's Health Insurance Program):
If your income is lower, you and/or your children may qualify for Medicaid or CHIP, which offer year-round enrollment. There’s no specific enrollment period for these programs, so you can check and see if your income qualifies and apply.
4) COBRA Coverage:
3) Employer-Sponsored Insurance:
If you have access to employer-sponsored health insurance, check with your employer about whether they have any mid-year enrollment options. And remember you can make changes due to a qualifying life event.
If you recently lost your job-based coverage, you may be eligible for COBRA continuation coverage. COBRA allows you to keep your previous employer's health insurance plan, but you may have to pay the full premium.
Each of the above options has its pros and cons, so it is important to carefully assess your situation and needs. Please note that not all of these options are guaranteed to be available and if they are not, you and your family may have to wait until open enrollment opens again the following enrollment period to receive coverage, leaving you uninsured for a full year.
source of support for you. knowledge breeds fear!
don’t understand is scary. yourself with as much information helps to mitigate some of the allows you to take back control. you are not alone; your feelings NORMAL and try not to be afraid. paralyzes us. There is hope that you balance your life. Recognize ALSO are affected with all the mentally, physically, socially and The active role that you in their life is truly a gift openness of the mind and the heart. It is important caring for another person can positive emotional change. feeling stress, many their role has had many effects on their lives. For example, report that caregiving has given of purpose. They say that makes them feel useful, capable are making a difference in loved one.2
Additionally, there are some projected changes to healthcare coverage that those with hemophilia or other rare, chronic conditions should pay attention to that may or may not occur in 2025 depending on the changes from the presidental election:
one’s disorder. Teaching and modeling these skills for your child will allow them to become successful adults who will be better equipped to manage their own care.
• More People May Get Help from Medicaid: Medicaid helps people who don’t earn a lot of money to purchase healthcare. Some states might start offering this help to more people, which is important for patients with rare diseases who need expensive treatments (National Organization for Rare Disorders).
• Price Changes in Medicines for Medicare beneficiaries: Some new rules will let the government negotiate prices for a limited number of older medicines, including some for rare diseases. Patients should watch for changes that could affect their treatments (Council for Affordable Health Coverage) (Avalere).
• More Ways to Get Insurance: There may be new rules to make it easier for people with lower incomes to sign up for insurance. This could help people with rare diseases get better coverage when they need it (HHS.gov).
The second part of communicating is to ask for what you need from your spouse, significant other, trusted friend, or family member. Try to remember that those around you care about you and in most circumstances, genuinely want to help. They won’t know what you need unless you tell them. When we are in the middle of a crisis, we don’t even know what we need. Our mind is flooded in crisis mode, making it difficult to communicate. When the dust settles, reflect on the crisis and write a list of
• New Ways to Pay for Expensive Treatments: Doctors and insurance companies are trying new ways to make sure patients can get the treatments they need, even if those treatments are expensive. But these new ways of paying could make things more complicated (Avalere).
Remember, YOU are the expert when it comes to your family’s health care needs. If you have questions about your health care coverage options, please reach out to your Hemophilia Treatment Center or your local chapter for guidance.
Michelle is an experienced executive in healthcare policy and advocacy, including payer relations, federal and state policy, and pharmacy concerns. As a mother of two sons with hemophilia, Michelle has spent over 33 years advocating and leading change in various roles, including several board positions throughout her career.
Michelle served as the Chief External Affairs Officer with the National Bleeding Disorders Foundation (formerly NHF), responsible for NBDF’s public policy strategy and agenda, and building key external partnerships. While at NBDF, she created the Comprehensive Care Sustainability Collaboration, which is now being replicated by other national patient organizations.
Teaching YOUR Children to
Navigating the Delicate Balance be I NDEPENDENT :
In the bleeding disorders community, we have many, many conversations about how to help children with bleeding disorders to become more independent in managing their own self-care day to day. We want them to take responsibility for their health.
A worthy goal, right?
But at the same time, parents often tell me how hard it is to let go and give their kids more freedom. They tell me how they recognize the mixed messages they send their children: take responsibility for your bleeding disorder… but only when I’m watching.
Sure, it’s scary to give up control. Yet we’ve all sat through the sessions on learned helplessness, and we know our kids need space to learn and grow their self-care skills.
So, what’s keeping us from letting go of control?
The Tyranny of “What If”
In the practice of cognitive behavior therapy, an approach that many therapists are well versed in, we talk to our clients about how constantly asking themselves “what if?” can increase stress and lead to anxious thoughts and feelings. We call that “what-if-ing.”
It’s human nature to ask the “what if” question. This question is very useful for planning purposes. Asking this helps us to think about possible outcomes and be prepared to handle them. A good thing to do at work, at home, and certainly as a parent of a child with a bleeding disorder.
However, therapists know that constantly asking “what if?” can lead to “analysis paralysis” and inaction, when someone becomes so fearful of what might happen that they stay stuck in one place. For a parent hoping to teach their children independence in caring for their bleeding disorder, this can lead to the mixed messages I talked about. “What if-ing?” can leave children feeling like “I want you to be more independent, but I am too afraid of what might happen if I actually let you sit in the driver’s seat.”
“What if-ing?” leaves parents anxious, while also potentially causing their children to fear their self-care. Anxiety can be viral in that way. If their parents don’t trust them, how can they learn to trust themselves?
First, Learn to Manage Your Own Fears
When parents ask me how to help their kids take more responsibility for their health, I encourage them to start by learning how to manage their own stress. Here are some ideas:
Name your fears.
Parents often say that they are just generally fearful about letting their children become independent. I ask them to get specific. Just what are you afraid of? For example, having a bleed and no factor handy? The point I make is that if you don’t know exactly what you are afraid of, then you can’t formulate strategies to help yourself, and in turn your child, to be better prepared and consequently less fearful.
Know when to take a step back.
Create your anxiety management toolkit.
Have a toolkit to manage your anxiety. What helps you to cope during stressful times? Exercise? Talking things out with a trusted listener? Sitting in a quiet place? Do an inventory of what helps you to cope during anxious times and then use your toolkit when you need to. One important tool is to talk yourself down, to self soothe. Here’s a start: “I’m human and I’m doing the best I can.”
Work on your own stress tolerance.
Be a model. Again, anxiety can be viral. When you are anxious about your child’s health, you “telegraph” that anxiety to them, and they pick up the vibes. Another reason why it is important to learn to sit with your stress, to tolerate it, without falling apart. Use your toolkit. And be a stress tolerance model for your children.
Be self-aware. For example, during those times when your worst fears get set off and you are on the verge of blowing up or breaking down. Know what pushes your button and, when you feel on the verge of losing control, take a step back. Mentally and even physically. Breathing helps - in through the nose, out through the mouth. Regain your composure and then re-engage.
Have your own support system.
Who’s got your back? Line up the people in your life who can listen without judging you or trying to tell you what to do. When the stress builds up and you need an objective listener, give them a call. When you talk about what’s going on in your life – or vent if you need to – you also frame it out for yourself. That’s the magic of taking things out.
And Then, Proceed With Confidence.
With your own anxiety well-managed, you can move forward with confidence in helping your child to become more independent:
Share how you feel with your child.
Sit down and talk about your hopes and dreams for them, and how important it is for them to manage their bleeding disorder on their own. Share your own fears, what scares you the most, and ask them to work with you to help you feel more confident while they also learn to feel more confident. Remind them how much you love them. Make this a team effort!
Teach decision making skills.
Talk with your child about how to make good decisions about managing their bleeding disorder. Come up with some hypothetical situations and discuss how to handle them. Talk about how to evaluate the options, their priorities, and decide how to move forward. This will help to illuminate any additional learning or resources you and your child may need to have in place. Give your child lots of encouragement for coming up with strategies that are realistic and that they can commit to.
Give choices but communicate consequences.
Make it a habit of giving your child age-appropriate choices. For example, food, chores, recreation. Teach them about trade-offs, how choosing one option may close the door to another. Negotiate with them. And then stand back and allow them to experience the consequences. I am not suggesting life-threatening choices here, but daily
life choices that can teach the importance of considering consequences without placing your child at risk. Most of all, communicate that every choice we make in life has a consequence, intended or unintended, and the importance of considering consequences before making a choice, and the impact of the consequences that may result.
Allow your child to fail… within limits.
Decide where you can safely allow your child to do it on their own. No, not to place their health at risk, but to make reasonable health-related decisions on their own. Take a step back and allow them to then experience the consequence, positive or not so positive. Talk with them
afterwards about why they made this decision, what they considered and didn’t consider, and the impact of their decision. Most of all, identify the lesson and how to use what they learned in the future.
Bottom Line: Allow Yourself and Your Child to FAIL
Are you familiar with the acronym FAIL? Basically, this is the acronym for “First Attempt in Learning,” and refers to an initial effort to accomplish a task. The idea of FAIL is that learning is a process, we ramp up over time. As we progress in learning, we experience some ups and downs because learning is all about trial and error. The message of FAIL is to keep trying, to pick yourself up after an error, review what you learned, and keep moving! Let’s welcome our mistakes because errors teach valuable lessons that parents and their children can use to achieve mastery.
The FAIL concept can benefit you and your child. As a parent, you are learning to manage your own stress about your child’s health while teaching your child the skills they need to manage their bleeding disorder. This is a process. So be patient with yourself. As a parent, you can help your child by talking with them about the lessons they are learning. Give them lots of encouragement. And share with them what you are both learning about how they can best manage their bleeding disorder. The building blocks of learning!
All together now! Let’s all FAIL… UPWARD!!! You got this!
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Just Got Diagnosed
Dr. McClain's book, “The Power of Closure: Why We Need It, How to Get It, and When to Walk Away,” was published by Tarcher Perigee Spring of 2024 and available on Amazon.
Gary 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 website is JustGotDiagnosed.com.
What is Self-Advocacy?
Self-advocacy is a term that is often thrown around without much thought and reflection as to what it actually means. Think about the following situations and see if you think the situation is one in which the person acted with advocacy or if they let others dictate what happened:
SCENARIO 1:
You and your child are visiting a Nurse Practitioner (NP) who is caring for your child, and you believe that the particular medication that they are on, is not the correct medication. The NP is adamant that they want your child to continue that medication for the time being and see if it makes a difference in the long term. You disagree with that decision but feel conflicted considering they are the experts. You leave the appointment without saying anything.
by: Lisa Cosseboom,
SCENARIO 2:
Your child is in seventh grade and is on a 504 accommodation plan in which they are unable to participate in a regular, structured physical education class. This is documented on the 504, along with alternative activities your child can participate in to fulfill the PE requirement. You find out from your child that they are just sitting in the gymnasium on bleachers during each PE class. You call your 504 coordinator or building administrator requesting a meeting to discuss the 504 plan and ensure that all accommodations are being afforded to your child. The 504 coordinator/building administrator does not grant you that meeting and indicates that they will make sure that your child’s 504 is followed. This is unsatisfactory to you, and you insist on that meeting to discuss and UPDATE the 504 Accommodation Plan for that school year.
The definition of self-advocacy
can be defined as “the ability to speak up on behalf of one's own life. It's about being able to decide what's best for oneself. In a broader sense, self-advocacy may be described as the process of effectively communicating and negotiating one's need” (Google AI definition). This includes being able to advocate for your child’s needs and teaching your child self-advocacy skills as a child with a medical or learning disability.
Self-Advocacy in Education:
If you believe your child is struggling in school academically or with social-emotional issues, it is your right to request an evaluation to determine if your child needs any specialized instruction or related services to be successful in the school environment. This could materialize into an Individual Education Plan (IEP) or a 504/ American with Disabilities Accommodation Plan. What makes this a bit complex is that every state has its own laws and regulations. However, there is a Federal law in place referred to as “IDEA (Individuals with Disabilities Education Act) that can play a role in the evaluation process. State laws and regulations supersede Federal law and are often more strict than Federal laws. It is important that you understand what your state requires and familiarize yourself with the laws. In general, IDEA requires that once a request for an evaluation is received and consent has been given, that the school district is required to, at a minimum, complete the evaluation within 60 days, hold a meeting to determine special education eligibility, and then discuss next steps.
It is important for parents to understand their rights and the responsibility of the school district in which you reside to become a better advocate for your child. It is recommended that you put correspondence with the school district in writing or in an email in which you have documentation that the request has been made. It is not atypical for a school district to try and circumvent completing a thorough evaluation and it is vital for parents to be an advocate and in frequent contact with their special
education department. It is also recommended that when requesting the evaluation in writing that you understand your rights and acknowledge that in writing as well. It indicates to the school district that you are well informed and makes it more difficult for the district to discourage the evaluation or refuse the evaluation when the parent is making it clear that they understand the law. Each individual state has some rendition of a “Parents Guide to Special Education” which will help in making informed decisions and will assist you in becoming a better advocate.
The first question asked after the evaluation process is completed and discussed with the comprehensive team (school psychologist, special educator, general educator and any related service providers, parents, and studentbeginning when they are 14 years old) is “Does your child have a disability?” The answer for most of you would be a “yes” because your child is dealing with a bleeding disorder. Generally, Hemophilia falls under the disability category of “Other Health Impairment.” However, your child may have another educational disability as well that requires specially designed instruction or related services (i.e. speech, OT, PT). That will be the main question that determines eligibility for special education.
If your child does not qualify for special education services, they may be eligible for a 504 Accommodation plan. The difference between an IEP and a 504 Plan is that your child would receive accommodations only that address their specific needs. Some examples could include a modified PE class, a private place within the school to administer Factor, extra time getting to class, provide class notes etc.
What happens if your child does not receive their agreed upon services or accommodations?
The next step would be to reach out to the building administrator to discuss concerns. If that also does not bring any resolution, then bringing it “up the ladder” and try the superintendent of schools. If you have exhausted all avenues within the school district, the next step would be to file a complaint with your state education department. Most state education departments have a complaint process, and you can generally find that information directly on their website. Another option is to file a civil rights complaint with your local attorney general’s office or the local Civil Rights department. It is important to remember that these complaints are about advocating for your child’s needs and your child’s civil rights. It sounds a bit “dramatic” when you start discussing a civil rights violation, but all students have the right to a “free and appropriate public education” and whatever they need to access that education!
Self-advocacy in education is key to the socialemotional and academic development of your child. Many of you probably advocate more easily for your child and their medical needs as you have been doing it for so long. Advocating for your child’s education is as important and vital to your child’s future. Your advocacy will be noticed by your child, when they are old enough to understand the concept and will only make it easier to teach them to understand their own needs and self-advocate when necessary. Always keep an open line of communication so your child understands the importance of speaking up for themselves, in a respectful and collaborative manner, and encourage your child at home as you model effective advocacy!
Lisa Cosseboom received her M.Ed. and C.A.G.S. from University of Massachusetts Boston in the area of School Psychology. She has worked in education for 18 years and is currently an Evaluation Team Chairperson in Lowell Massachusetts ensuring that schools follow state and federal special education timelines.
WHATS the PLAN?
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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
Janet Brewer, M.Ed
Lisa Cosseboom, M.Ed, C.A.G.S.
Joanna Davis, MD
Ashley Hall
G Shellye Horowitz
Gary McClain, PhD
Michelle Rice
Debbie de la Riva, LPC
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