For women carrying the hemophilia gene, getting a proper diagnosis is not easy. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Many women report that medical professionals are still under the assumption that a bleeding disorder can only affect males. It is these challenges that can make getting the proper treatment and being physically active difficult and challenging.Â Women that would like to be physically active but are unable to treat prophylactically with the proper medication, may experience painful bleeds that prohibit them from continuing to exercise.
Diagnosed with hemophilia at a young age, Tammy fought her entire life trying to get medical professionals to believe she had hemophilia. Now at the age of 40, Tammy has used her strength and determination to fight for answers and realize her dreams.
I was more fortunate than most, as far as a diagnosis is concerned. I was diagnosed with hemophilia A at the young age of 5. My father, who also had hemophilia, passed away from hepatitis C in 1981 when I was 7. After the death of my father, I had no involvement in the bleeding disorder community, until after the birth of my son, Garret, now 20 years old. During my years growing up, I also did not have access to factor. We were just told that I would need to be infused if I had surgery or a major accident. To us, that seemed like enough information at the time.
I remember telling numerous physicians throughout the years, that I had hemophilia. Most either looked at me like I was crazy or told me that was impossible. I was told over and over, “women can’t have hemophilia”. I heard that sentence so many times; I came to hate those four words. I had the diagnosis, I knew my levels, but I was unprepared to be an advocate for myself.
When I checked into the hospital (a major Texas teaching hospital) to give birth to my son, I expected better education and awareness for my condition. Upon registering to the hospital I, explained to the staff they should be aware that I had hemophilia and once again, I heard those dreaded words, “women can’t have hemophilia.” I was young, just 20 years old and did not have the experience in life to know that it was OK for me to tell the doctors they were wrong. I didn’t know it was OK for me to fight for myself. Nor, did I really know the consequences of NOT fighting.
They proceeded to give me the epidural and the bed filled with blood. No one seemed to be overly concerned, but I felt it wasn’t normal, as did my family. I left the hospital with a hematoma the size of a golf ball on my spine. It took over a year before I was pain free. My son, born 4 weeks premature, was admitted to NICU for underdeveloped lungs, intubated and immediately put on factor. I learned so much about my own bleeding disorder through my experiences as his mother. His life made me strong.
In the years that followed, my son’s hematologist treated my symptoms as aggressively as they did his. I was having more bleeding issues with age. I realized I had numerous joint bleeds growing up that weren’t diagnosed or treated, resulting in joint damage.
The director of our HTC left and a new doctor came in to take over, just as I was working with my medical team to undergo a hysterectomy. The new physician never really did seem to take my concerns seriously. I decided that if my previous hematologist trusted him enough to take over his practice, he must know what he was doing.
However, he refused to prescribe factor for me pre-op and put me through surgery without any precautions. I woke up in recovery, his back to me, telling his staff “I don’t know why she is bleeding. She doesn’t have hemophilia.” I felt so betrayed. At this point, I was done. Needless to say, I called my nurse several days after the surgery to let him know my bleeding was increasing. The response was that he didn’t believe it was hemophilia related, but why don’t I take a dose of factor and call my surgeon if it continues. I infused, and once again took matters into my own hands and decided from now on; I would listen to my body and be my own advocate. I would not be a victim of gender discrimination again.
I am now 40 years old, and over the last 5 years I have gone through yet another journey that led to where I am today. Over the last 10 years, I have traveled frequently for work. I began to notice swelling in my legs and feet. The short version of a very long story is that after years of ongoing joint bleeds; I was finally diagnosed with a vein disease. My veins were leaking into the joints and surrounding tissue. After having them treated, I started to improve and finally realized my dream to become a Certified Yoga Teacher.
Yoga has healed me. It has taught me patience, humility, and the strength of determination. Teaching others and making a difference in their lives is extremely rewarding. I have my hemophilia, passed to me through generations, that has led me to this point. I wake up each day looking forward to seeing what the future holds.
Tammy Davenport was diagnosed with hemophilia A at age 5.Â She is a certified yoga instructor and has 2 children, a daughter Marissa, and a son Garret who also has hemophilia A.Â She has dedicated her life to helping families with bleeding disorders and is passionate about women’s issues. She encourages women to become advocates for themselves.