An Open Letter to Newly Diagnosed Women With Bleeding Disorders

Originally published on Hemophilia News Today by BioNews, Inc.

Dear Newly Diagnosed Sister,

Welcome! You are now part of a supportive community full of love, courage, and inspirational superheroes. Always remember that you are not alone. I was diagnosed with von Willebrand disease and hemophilia B in 1975, at age 10.

Your diagnosis

Diagnosis of bleeding disorders is often the most challenging part of the journey and is the first step to saving and improving your life. Bleeding disorder symptoms may have led to your diagnosis. Your monthly periods are probably extremely heavy, and you may be iron deficient and anemic from blood loss. Bleeding controls your life, and you are discouraged. With treatment, you will get better.

Bleeding disorders may be tricky to diagnose and treat. For example, a diagnosis of von Willebrand disease may need testing over several months as levels fluctuate. You will need to have patience.

Most hematologists do not specialize in bleeding disorders. I suggest you use a federally funded hemophilia treatment center (HTC) for your diagnosis and treatment. HTC hematologists specialize in bleeding and clotting disorders. Resources will be available to you, including social workers and access to financial aid programs, as treatment is expensive.

My HTC is two hours away from home, but I only need to visit once a year. We discuss issues and questions by phone and email between visits.

Other family members may need testing, as many of these disorders are genetic. My parents did not have a bleeding disorder, so my hematologist suspected I had a genetic mutation. I let my family members know of my diagnosis. Years later, my cousin had heavy bleeding after a tonsillectomy and was diagnosed with von Willebrand disease.

Please keep copies of your test results. I keep mine in the cloud. Levels can fluctuate. More than once, I have been told my von Willebrand disease has disappeared, only to have my levels drop with the next test. Providing my hematologist test results and doctors’ notes dating back to the 1980s has helped avoid confusion.

Treatment

Your diagnosis is the first step to developing a treatment plan. Treatment may save your life. Treatment will help your bleeding and will address other issues you may be having, such as iron deficiency or joint bleeding. You will need to consult your hematologist before any procedures occur. Even a simple colonoscopy may require treatment.

Treatment today is much better than when I was diagnosed in the ’70s. You are fortunate. Back then, my treatment consisted of cryoprecipitate and fresh frozen plasma. Today I use factor infusions for my von Willebrand disease and hemophilia B. Iron infusions have improved my life when I am iron deficient or anemic.

Once you have a treatment plan, your treatment may need fine-tuning. Keep a log of your bleeds and take pictures. There are several apps to track menstrual flow and bleeds. I use an app called MicroHealth that connects with my HTC.

Be loud

You will need to be your own advocate. Learn to speak up and, if needed, be loud. If your treatment isn’t working for you, make sure you contact staff at your HTC. You are not crazy.

For years, my treatment for von Willebrand disease didn’t work to control my periods. I was anemic and felt awful. After getting loud and insisting on more testing, my doctor determined I needed factor IX infusions for hemophilia B and found I have a platelet function disorder. I was relieved because I didn’t understand why my treatment wasn’t working.

Learn

Women with hemophilia are still very misunderstood outside of the bleeding disorder community. Learn as much as you can. Doctors have a better understanding of bleeding disorders in women today compared to the ’70s. Great strides have been made in diagnosis and treatment. As these advances continue, you will find it best to stay current.

You are not alone

There are several Facebook groups and conferences for women with bleeding disorders. Reach out to me, and I will be happy to point you in the right direction.

Eventually, you will get to a place where bleeding isn’t the constant focus of your life. In my case, this happened when my periods ended. Many days, I forget I have a bleeding disorder. Get out there and live your life. The hard part is behind you. I am rooting for you.

With love and be well,

Jennifer Lynne