Hemophilia Care Entails More Than Treating Bleeds

Shellye Horowitz avatar

by Shellye Horowitz |

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Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia.

Preventing and treating bleeds unquestionably is the top priority. But it also is important to address mental health issues that accompany hemophilia.

March is Bleeding Disorders Awareness Month, and understanding the myriad complex issues one faces when coping with a bleeding disorder is key. We know we need to stop the bleeding, but what else do we need to do?

I have found that living with a bleeding disorder entails so much more than stopping the bleeding. Sometimes that is the easy part (once properly diagnosed, that is). There are additional realities I’ve had to cope with as well, which I’d like to share.

My body doesn’t always cooperate

Elementary school was when I first noticed it. I wanted to run and play and be good at sports. Being a soccer star seemed a worthy goal. However, my ankles hurt every time I ran. I limped along the field and was always the last one chosen for teams. This became a recurrent theme in gym class.

No matter how determined I was to be a valued athlete, my body simply wasn’t willing. I didn’t yet have a proper hemophilia diagnosis at the time, and classmates relentlessly teased me. I wondered if something was inherently wrong with me. I hated myself and my body for being unable to keep up.

It is disempowering to constantly fight for medical care

Unfortunately, many medical professionals don’t understand that women can and do get hemophilia. Educating medical providers is sometimes necessary to access treatment. Emotions get easily taxed when one has to constantly explain pain and injuries. Just once I would love to encounter an emergency room physician who understands hemophilia, and that women can get it.

Anxiety creeps in

For years, I struggled with anxiety because I didn’t have a diagnosis or treatment for my hemophilia. I was in pain, and nothing worked. I needed factor replacement products but didn’t know it, and I was unaware that bleeds were the source of my pain.

I couldn’t be as physically active as I wanted. Between the pain and the lack of exercise, my anxiety grew.

Medical care isn’t always available

I struggled with doctors’ appointments because I felt I wasn’t being heard or helped. Sometimes I didn’t even bother seeking medical treatment because my pain was brushed off. I now know that I was having bleeds, but medical professionals missed them because they thought women couldn’t have hemophilia.

Sometimes my injuries took months to heal because I wasn’t given the factor I needed. One ankle injury had me in a cast and then a walking boot for nine straight months.

Depression can surface

Depression was also a struggle. It’s hard to be different and not understand why. I really hated myself because I believed something was inherently wrong with me.

Teachers told me I couldn’t keep up because I didn’t try hard enough. Others called me lazy. I struggled to make and keep friends. All of this was rough, and I eventually became a misfit.

Some days I could stuff my emotions and cope. Other times, I just wanted to stay in bed. In my 20s, I went an entire week without leaving home. I was mentally and physically exhausted.

It gets better

The best thing I can say to women who struggle with bleeding issues is that it gets better. Please do not give up. We’ve come a long way, even though many medical professionals still need to be educated. You are not alone. Reach out to your community of blood sisters. There are women who will help support you as you seek care.

Some hemophilia treatment centers have specialized clinics for women. If you can travel to one of these locations, you may have more success getting the diagnosis and care you need.

Life can drastically improve

I went from being a kid who couldn’t keep up to cycling up to 100 miles a week. I also hike and dance. I have the treatment I need. When I get a bleed, I treat it and heal quickly. Even better, I have a plan that prevents bleeds in the first place!

I also addressed the anxiety and depression that came with hemophilia. I forgave my body for not cooperating when I was younger. A lack of treatment was to blame, not that I was a bad person.

Now, I am fortunate to live a better life, and I hope you will, too!

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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, and are intended to spark discussion about issues pertaining to hemophilia.

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