Fighting to be heard on my journey with bleeding disorders

Women with bleeding disorders often have to speak up to be properly treated

What do all the people with bleeding disorders I’ve interviewed for this column have in common? Each of them has a story about certain doctors not listening to them.

I have a story about that, too. But first, I want to acknowledge that I now receive exceptional care from my hematologist and the rest of the team at my hemophilia treatment center (HTC) in Tampa, Florida. If you work there and are reading this, please know that I am immensely grateful to you, and because of you, I am doing well.

In 1975, when I was a child, I was diagnosed with multiple bleeding disorders after experiencing severe bleeding following a tonsillectomy. I still don’t fully understand my diagnosis. After revisiting my complex treatment plan with a detective’s lens, it appears the issue involved my factor levels and platelets.

My treatment plan involved fresh frozen plasma, cryoprecipitate, and platelets — something I remember quite clearly. I underwent several knee surgeries following this regimen, and they all went relatively well. Then, my pediatric hematologist retired.

In 1983, at 18 years old, I had the privilege of visiting one of the nation’s foremost hematologists, Joan C. Gill. Gill was based in Milwaukee, Wisconsin, near my hometown, and specialized in von Willebrand disease (VWD).

To this day, she remains the most exceptional doctor I’ve ever met, and I’m forever grateful for her. During my bleeding episodes, she’d call the hospital to personally talk to me. She genuinely cared, and even guided me through the tragic tainted blood era, when thousands of people with bleeding disorders were infected by blood tainted with HIV and hepatitis.

After carefully listening to me describe my symptoms, she suspected I might have VWD. Sure enough, my von Willebrand factor levels were low, and just like that, I was given a new diagnosis. Gill then put a treatment plan in place.

But every year, during my annual appointments at the HTC, I voiced concerns that my treatment plan wasn’t working. Despite following the regimen, I was hospitalized several times due to post-procedure bleeding. I also struggled with anemia and my menstrual bleeding was severe and unmanageable.

I felt unheard and so frustrated that I’d go home and cry, wondering if it was all in my head. At times, I felt like giving up, resigned to the idea that I’d just have to live with extreme bleeding episodes. Yet deep down, I knew something was seriously wrong.

New testing reveals another diagnosis

According to my medical records, as documented by a nurse, “She is questioning her diagnosis because she stated when she was younger her doctor had a completely different diagnosis for her and she was treated with [cryoprecipitate] and [fresh frozen plasma] and platelets and didn’t have this many problems with bleeding. I told her I will discuss this with Dr. Gill.”

Thankfully, in 1998, Gill agreed to conduct additional tests. She listened to me. The results showed that my factor IX level was low, indicating hemophilia B, and I also had an issue with my platelets. I wasn’t crazy after all.

Gill looked me in the eye and said she was very sorry. She added factor IX and platelets to my treatment plan. In 1998, prescribing factor products to a woman was unheard of.

Today, my treatment plan includes medications for both hemophilia B and von Willebrand disease. I can honestly say that I feel heard and am in a good place with my bleeding disorders. It is not “all in my head.”

I recognize how fortunate I am, as many women are still struggling to receive a proper diagnosis and effective treatment. I hope this will change — and soon.