Hemophilia, Epilepsy, and Independence: Time to Fly, Baby Bird

I’m a 25-year-old “PWD” (person with disabilities), and I’m not a baby bird anymore. It’s time for me to fly on my own, be independent, and take care of myself.

Recently, I had a string of bleeding episodes. It was difficult for me to put a smile on my face. I couldn’t do the things I needed to do to function well. Even sleeping and eating became difficult. I felt helpless and I couldn’t do anything about it. I didn’t know how to ease myself through therapy.

At times like these, I feel ensnared in my bed. I feel even worse because my carers have to trouble themselves to ease my pain. However, here’s the thing: I don’t want to be a burden to these people. I absolutely love my carers, which is why I want to learn how to help myself handle my illnesses. It’s for the good of both my carers and me.

Every year during bleeding disorder summer camps, we always hold a self-transfusion workshop. During these sessions, our members give themselves their own prophylactic dose of factor concentrate. What’s ironic here is that I’m one of the people who organize this event, but I have yet to be able to transfuse myself properly. Funny, right? I need to admit that I need help in this area since I’m obviously not that good at it.

It’s understandable that some caregivers may care too much, to the point that it may seem as if they are babying those they tend to. After all, carers may feel sympathetic for the people they care for because of their situation. Speaking as a PWD, sometimes what we ask for is not sympathy but compassion. We’ll ask for help when we need it. Giving us the chance to help ourselves may sometimes be the best help you can give us.

In my case, I want to learn how to give myself therapy effectively. People worry about me because I have both epilepsy and hemophilia. I know where this concern comes from. Terrible things could happen when an epileptic attack occurs. I might ruin my medicine or infuse myself the wrong way. But one thing worries me more: what happens to me if caregivers aren’t around?

It’s hard for me to be independent. I may be able to manage my hemophilia, but epilepsy complicates things. I need constant surveillance, and as I’ve mentioned before, making money isn’t as easy. But I may be able to give myself an edge if I learned how to treat my bleeds. For now, though, this is where I need help from my carers the most. I need them to help me master the art of treating myself so I won’t be afraid anymore.

Holding a needle during our workshops both empowers and frightens me. I used to have trauma from infusions. But being able to inject factor IX into my vein makes me feel in control of my life. It sounds so small, but it fills me with confidence and self-esteem.

I hope carers understand the desire of many PWDs to feel empowered.

***

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.