The physical symptoms of hemophilia and the challenges they pose to those living with the disorder – like chronic swelling, reduced mobility and long-term joint damage – are well documented. But the psychological and emotional challenges can be harder to see.
Since hemophilia is so rare, those who are diagnosed can feel isolated and misunderstood. Add that to the daily uncertainties, especially around the risk of uncontrolled bleeding, and it’s no wonder that a study found that 53 percent of young adults with hemophilia suffer from stress, insomnia, depression or anxiety – and many of them say these conditions are due to their disease.1
As a result, people living with hemophilia have formed tight-knit communities, where they are encouraged to speak openly about the issues they face, because while the disease might be rare, their experiences are not. By talking to each other and learning from one another, they can help each other overcome the challenges they face.
In that spirit of sharing, people within the community told us their stories. Below you can read about two young adults with severe forms of hemophilia (L.A. Aguayo and Tai-Yan Chou-Kudu), a dedicated advocate (Maryann May) and a psychologist (Dr. Cathy Buranahirun) who works with families in the hemophilia community. When you’re done, help us spread the word by sharing their stories using the social sharing icons at the top of this page.
“I was the first born in my family with severe hemophilia. When I was younger, I was known as a troubled kid. I was disobedient, failing in school and seemed to lack understanding of who I was and what I was truly going through. I felt so misunderstood and blamed myself for the failures I was experiencing in life. As an adult, I hit rock bottom mentally. Even my closest family members gave up on me and let me go. I got to a point where I had to soul search and rebuild myself from the ground up. During this phase, I discovered that I just needed mentorship and direction. I needed someone to understand what I was feeling. A lightbulb went off in my head and I knew that I had to make myself become a leader in my community and become the person I needed. I used bodybuilding as my platform and I started making connections with hemophiliacs all across the nation. I found the purpose in my pain.
For me, connecting with others on social media has been life-changing, so much so that I created my own platform called #HemoLife. We have special groups for mental health and also fitness. We build amazing friendships online and then occasionally connect at local and national bleeding disorder events. Our strong community is the biggest blessing we have!
I try my very best to articulate how I feel to people without a bleeding disorder. I think it’s very important to try and educate people whenever possible. It seems impossible at times to truly get someone to understand the full spectrum of mental and physical effects, but you should at least give people the opportunity. The most deceiving part of having a bleeding disorder is that we could appear fine on the outside but could be battling so much on the inside. I also practice letting myself be upset at times. We try to cover up our pain to look strong but sometimes it’s okay to not be okay.”
The most deceiving part of having a bleeding disorder is that we could appear fine on the outside but could be battling so much on the inside.
- L.A. Aguayo
“Bleeding disorders are sneaky. People often present as physically normal while living in pain. Although most people I meet with hemophilia and other rare bleeding disorders are strong and resilient, I know from experience that it takes a toll on parents, spouses, siblings and anyone close to us to keep the appearance of normalcy and give those affected a good quality of life. Our normal might not be the same as people who don’t have chronic issues, but it is normal, just in a different way.
My son and I have grown up together living with his hemophilia. Not knowing about the disease until I had him meant we both learned together. Watching him struggle with the pain and uncertainty of not knowing what the next day will bring gave me the ability to change plans, make snap decisions and have empathy for others. I have always felt that being involved in the larger bleeding disorder community was the biggest saving grace for me; having that person or people to turn to and being able to ask, “What did you do when that happened?” The experiences that we have to share with each other make the most difference. A question I ask myself now is “How can I make this knowledge available to others?”
Sometimes the hardest part of my job as the executive director of the Connecticut Hemophilia Society is knowing there are people unable or unwilling to be a part of the larger community. I struggle knowing there are people we could scoop up and bring into our family, but it’s something I can’t control.
When someone has a child with a bleeding disorder and they are completely blindsided by it, it’s our job – not just as a chapter but also as a community – to support them until they get their feet under them. It’s up to us to guide them to the resources, whether it's to a Hemophilia Treatment Center or to just listen when they need to talk. Whoever finds their way to us, it’s our responsibility to give them the best support we can.”
“Although the connection between hemophilia and emotional/mental health is very much unaddressed, I, speaking as a hemophiliac, can tell you that it is not just a physical condition. This was not something I was aware of or something that had ever even crossed my mind until I was 18.
Throughout school, it was difficult for me to connect to and relate with my classmates. I think the daily experience of living with a chronic condition and sometimes having to be in the emergency room surrounded by trauma because of an injury or bleed makes you have a different perspective on life and consider what’s really important. Many people don’t go through those experiences, so it can be hard to connect with others about how they impact you. It felt isolating, and I even went through phases of deep depression.
I started to look into the connection between chronic conditions and mental health, and then applied those principles to my own experience. As I reflected on my life, everything just started to come together and I understood how hemophilia had shaped my life on all levels. Being able to understand this connection and open up about it was a huge relief. I had internalized these experiences and emotions for a long time because I thought I was the only one going through this. I know a lot of other kids with hemophilia or chronic conditions who aren’t aware of the emotional impact it can have on them so I felt like I had to share my story with people in the community.
My grandma also played an important role in helping me realize the non-physical impacts of hemophilia on my life. I would talk to her about how hemophilia impacted me emotionally and mentally. She has watched me grow up and has seen how I’ve developed compared to my twin sister who doesn’t have hemophilia. She is a very intuitive and spiritual person, so I am lucky to have her in my life.
I would encourage people with hemophilia to do research and see what resonates with them. Once you know what you identify with and have some resources on it, you’ll have an easier time putting this into words to communicate to others. I can honestly say that the understanding that I now have of hemophilia and its non-physical impacts on my life has brought a new light into my understanding of myself and my unique place in the world.”
As I reflected on my life, everything just started to come together and I understood how hemophilia had shaped my life on all levels. Being able to understand this connection and open up about it was a huge relief.
- Tai-Yan Chou-Kudu
“Although the medical management of hemophilia has rapidly changed over the past few years, awareness of and care for behavioral health in hemophilia has progressed much more slowly. Individuals living with a chronic illness have a higher risk of depression, anxiety, and other difficulties related to mental well-being, which is consistent with what my colleagues and I have seen in our clinical work with individuals with hemophilia. Some of the most common challenges related to living with hemophilia are coping with treatment and potentially frequent infusions, chronic pain, and feelings of isolation.
We find that individuals who experience symptoms of depression and anxiety have more difficulty managing the multiple responsibilities related to hemophilia care. With the decreased treatment adherence, they are also at greater risk of bleeding episodes and physical pain. Additionally, parents also often take on the role of the administering treatment, which can result in stress and negatively impact their emotional well-being. Increased awareness is needed to decrease potential stigma regarding psychosocial challenges, provide improved identification of those challenges, and increase the availability of care that fosters emotional well-being.
What I find most remarkable about my patients and their families is the resilience they demonstrate. Given the episodic, and sometimes unpredictable, nature of bleeding episodes and other complications, individuals with hemophilia may not be able to control all the physical aspects of the disorder, so being able to adapt to and “bounce back” from these challenging experiences is key. A few ways people can build resilience include developing and working toward realistic goals, regularly engaging in enjoyable and relaxing activities, maintaining a hopeful outlook, and finding sources of social support within and outside of the hemophilia community. It is incredibly rewarding to be able to see my patients repeatedly adapt to new challenges and thrive.”
1. Witkop, M, et al. Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia. Am J Hematol. 2015; 90(Suppl 2), S3–S10.