Real Stories from People Living with Hemophilia – Jennifer
I was born in 1965 and diagnosed with hemophilia B and von Willebrand disease (VWD) at age 10. I learned of my bleeding disorders after I bled very heavily during a tonsillectomy (a surgery to remove the oval shaped tissues, called tonsils, at the back of my throat). The bleeding stopped but started again a few days later. My pediatrician ran some tests and referred me to a hematologist (a healthcare provider who specializes in blood disorders) at the Children's Hospital of Milwaukee.
I was young, and my parents were young too. I don't think we understood. I was told, "your deep blood doesn't clot as it should." I had no idea what that meant. I relied on my parents. They did their best, but they were in a bit of denial. My doctor tested them for bleeding disorders, but their tests came back negative. Many years later, my cousin was diagnosed with VWD after problems with his tonsillectomy. I have heard stories of our grandmother needing to have her throat and nose packed to stop bleeding.
As I look back, my childhood was affected more than I realized at the time. I had chronic knee problems and needed two knee surgeries before I was sixteen. The surgeries involved treatment with several blood products and a drain inserted in my knee. My knees kept me from participating in gym class at school. I loved ballet and tap, but I quit dancing because my knee couldn't handle it. Swimming was my savior. I competed from a young age through my first year of college.
Once I started my period, I often couldn't go an hour without bleeding through my protection. It was common to see me walking the school halls with a sweatshirt tied around my waist. I didn't know my bleeding was excessive. The subject of menstrual bleeding was taboo in my family.
Today, I feel the impact of my bleeding disorders in my joints more than I did a decade ago. For example, a foot injury took a very long time to heal, and my foot still isn't quite right. I cannot walk more than a mile without my foot swelling up and throbbing.
Resources and Treatment
Resources weren’t available to my parents or me when I was a child. I don't think there were any programs for girls at that time. The internet and Facebook didn’t exist. We were very much on our own.
Treatment was also very different in the 1970s and 1980s. I received fresh frozen plasma, cryoprecipitate, factor, and platelets—kind of like the kitchen sink of clotting products. These treatments put me at high risk of HIV and hepatitis. I tried two treatment products for a few years, but they didn't work. Birth control pills helped for a while with menstrual bleeding but then stopped. Eventually, an endometrial ablation (surgical procedure that is used to remove the lining of the uterus) put an end to my periods.
I learned to self-infuse (administer my own medicine) recently to avoid relying on home health nurses and the local emergency room. Periodically I receive iron infusions to treat anemia. My care is managed by a hemophilia treatment center (HTC) two hours from my home. I have learned it is essential to find treatment at an HTC. The HTC nurse is incredible - I can email her a question and receive a response within a few hours. The care I receive is excellent.
I am overwhelmed by and grateful for the abundance of resources for those living with bleeding disorders. I live in a small community, and online support groups and webinars have been excellent sources of support and education.
In the 1990s, my bleeding disorders inspired me to volunteer for a summer camping program for kids affected by HIV/AIDS. At the time, many boys with hemophilia contracted AIDS from contaminated blood products. Whenever I feel sorry for myself, I think of these superhero kids who had extreme health and social challenges. Many did not survive. I met some fantastic people through camp who remain dear friends to this day. (For more information on CDC’s current work on blood safety, please visit the website.)
I did not disclose my condition outside of my closest friends and family because hemophilia was closely associated with AIDS. Because it was a new disease, there was little information about AIDS at that time and, what was known, had a negative stigma. Even now, only my most immediate family members and closest friends know of my condition.
I am sharing my story publicly because I want today's young people to remember the generation of people with hemophilia who died due to HIV and hepatitis. Living through that time had a strong impact on me. I am also sharing my story because women with hemophilia and other bleeding disorders need better diagnosis and treatment options. We need to identify at-risk women sooner.
I still have a hard time sharing, but it gets easier the more I do. I write a column for BioNewsexternal icon, and I am active on several VWD and hemophilia Facebook groups. I am creating a website to share my columns and other resources for bleeding disorders.
My Advice for Others
Most importantly, breathe. There is treatment available, and treatments keep improving. I have several other tips to offer.
- Find your nearest federally supported HTC and work with them for diagnosis, treatment, and follow-up. They will have many resources available to you, including a social worker and a pharmacist. Ask for help when you need it.
- Be prepared. Wear an accessory that has medical information on it (like a bracelet), ask for a treatment letter to give to other providers, and have treatment on hand. In my refrigerator, I keep an extra supply of medicine to use for emergencies.
- Learn to infuse. It makes life easier and provides a level of comfort knowing you can help yourself if needed.
- Participate in educational programs offered by your HTC or national nonprofit groups. Many changes are happening within the bleeding disorders community. It’s best to stay on top of them.
You may have a bleeding disorder, but it doesn’t have you. Live and enjoy your life.
CDC thanks Jennifer for sharing her story.
If you would like to share your personal story, please contact us at Contact CDC-INFO