By Linda “Lew” E. Wyman-Collins, BSN, RNC-NIC
As a woman with hemophilia A, a platelet disorder and Ehler’s Danlos Syndrome (EDS), the bleeds I experience are more in line with moderate to severe hemophilia. At age 65, I suffer with various medical complications and side effects from receiving a later-in-life diagnosis. I did not obtain a diagnosis or proper/adequate treatment for most of my life. The pursuit of equal or compatible treatment that my blood brothers receive has been a struggle.
Throughout my life, dental work and cleanings caused extensive bleeding. Impacted wisdom teeth caused me needless mouth pain for many years, but because of how easily my mouth bled, no one wanted to extract them. Finally at 52, I found an oral surgeon who agreed to remove them with treatment prior to procedure. I experienced senseless tooth and mouth pain for so many years. Now I treat with DDAVP nasal spray prior to all dental appointments, and the bleeding is minimal.
When I was 11 years old, I began having gastrointestinal bleeding. Physicians believed I had colitis; the treatment was dietary changes and medications. The mucosal lining of my lower intestine is permanently damaged from years of uncontrolled bleeding. Now with a proper diagnosis, I am able to effectively treat with clotting factor, desmopressin (DDAVP®) and tranexamic acid (Lysteda®).
All my life, I have bruised very easily and when my menstrual cycles started, I bled heavily with large clots for more than seven days every month. When I voiced my concern to my doctors, I was told my cycle was “normal” because my mother and grandmother also had heavy cycles and that being a fair-skinned redhead added to the bruising. In retrospect, my mother and grandmother both had undiagnosed bleeding disorders. Due to the prolonged bleeding each month, I had chronic anemia, which greatly affected my quality of life.
In 7th grade I injured my knee during gym class. When I look back at that injury, it was clearly a muscle and joint bleed. As I grew older, my left knee deemed itself my target joint. It is chronically swollen with decreased range of motion; x-rays reveal the knee joint is now bone-on-bone. Steroids and gel injections only offer temporary relief, and I am now considering a knee replacement. Had my joint bleeds been treated properly when I was younger, the extensive joint damage could have been avoided or at least lessened. I now wear rib, back, knee and thumb braces due to impaired joints.
Current studies are revealing a correlation between Factor VIII deficiency and bone health, and I have been diagnosed with osteopenia. Women with a bleeding disorder are developing osteopenia and osteoporosis at an earlier age.
In 1983, when my oldest son was diagnosed with severe hemophilia A at 17 months, scientists had not yet discovered the gene where the mutation occurred. When DNA testing became available, I was tested, and the results showed I had the same gene mutation as all 3 of my children, yet despite my bleeding history, I was labeled as just a “symptomatic” carrier.
At 35, I had an inguinal hernia repair scheduled but at that time, wasn’t being seen by a hematologist. After reading in my medical record that I was a carrier, the anesthesiologist refused to clear me for surgery until I was seen by a hematologist. I went to a hemophilia treatment center and was tested and was diagnosed with a platelet disorder.
Shortly after, I was identified as having EDS and was then prescribed DDAVP via IV for any surgery or invasive procedure. Tranexamic acid and aminocaproic acid (Amicar®) helped with menstrual cycles and mucosal bleeds. In my late 40’s, I was finally properly diagnosed with a bleeding disorder and received appropriate treatment for chronic anemia; yet I was not given access to clotting factor for another 17 years.
Unfortunately, the majority of the medical community is often still under the notion that only males can have a bleeding disorder. The assumption is women are only carriers and do not need treatment. However, rather than basing care on gender, treatment should be based on documented factor levels and bleeding tendencies.
Our national organizations, non-profits, and pharmaceutical companies have done a great job at educating the community on bleeding disorders in men and women. Yet, there still remains a missing piece on prescribing proper treatment for women. Education needs to be expanded at the medical school level to instruct doctors-in-training to recognize that women can and do bleed. In the meantime, women need to advocate for themselves with a much louder voice and not allow themselves to be dismissed. In the 25 years I have been active in the bleeding disorders community on a national level, I have not seen much change in the timely diagnosis and adequate treatment for women. This needs to change.
ABOUT THE AUTHOR
Linda “Lew” E. Wyman-Collins, BSN, RNC-NIC is a mother, wife, aunt, sister, and daughter of someone with a bleeding disorder and has a bleeding disorder of her own. As a nurse, she has much experience in neonatal intensive care and was recognized as Dallas/Fort Worth Great 100 Nurses. Lew served HFA formerly on the Board of Directors, Blood Sisterhood Chair, Symposium Chair, Medical/Professional Advisory Board member, and is a founding member of HFA’s women’s group Focus on the Feminine. She has served on Texas State Bleeding and Clotting Disorders Advisory Council and is a member of Equity in Bleeding Disorders Care for Women and Others. Additionally, Lew has presented frequently at national and international conferences and has authored numerous articles on hemophilia and women with bleeding disorders in industry magazines and journals.
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