I grew up believing that it was impossible for a hemophilia carrier who was also a woman to manifest the condition.
I had stitches five times before the age of 5. I limped through elementary school, in pain from physical education classes. I now know the pain I experienced as a child was likely due to joint bleeds.
I tripped on the stairs in college and landed so hard on my knee that it doubled in size with blood. It took months to heal, but no one thought to label the injury as the bleed it was or to prescribe factor products.
I was in a major accident and struggled for months with a head injury. The years following the accident were some of the worst in my life. I can only imagine how different things might have been if I’d had a diagnosis of hemophilia and was treated with factor products.
A diagnosis abroad
While living abroad, I had a spontaneous bleed the size of a quarter on my calf. It spread over the next 48 hours until it covered my entire calf. I asked to see a hematologist and was finally diagnosed with mild hemophilia. He insisted that I call whenever I had a major procedure so we could make a plan together.
That was the beginning of my journey toward appropriate diagnosis and care.
The years of inadequate treatment started to take a toll. I struggled with joint pain and arthritis from untreated bleeds. Anti-inflammatory medications did not work. I learned as a child to ignore the pain, but I no longer could.
Factor reduces pain by treating bleeds
I started connecting more regularly with hemophilia treatment centers (HTCs) for emergencies and planned procedures. I noticed that my pain disappeared when I was on factor replacement. Was I experiencing microbleeds, I wondered? Active bleeds that I didn’t know were bleeds?
Some medical professionals call this a “placebo effect.” They don’t believe women who say that factor reduces their pain, but for many women, it does. Factor products reduce the pain by treating the underlying bleeding.
My pain wasn’t just increasing. It was limiting my life. I struggled to maintain the level of physical activity I wanted and gave up activities, like dance, that caused too much pain. I documented what was going on and kept in touch with my HTC.
Today, I dance
I’ve been able to attend a weekly dance class for the first time in years. Factor products protect me and allow me to participate in an activity I love and greatly missed. The risk of injury is high, so I use factor immediately before class.
I was asked to join the smaller group that performs publicly after three months. I’m injured on a regular basis between the stomping, twisting, and jumping. The injuries used to take weeks to heal, but with factor in my system, they heal immediately. There are times when my knees aren’t happy during class, but I am able to recover. More importantly, my soul dances and I feel alive.
Today, I dance. As I celebrate that freedom, I think of all my blood sisters who struggle to obtain a proper diagnosis and treatment plan. Sisters, I hope that one day you will dance, too!
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.