Asia has been under the care of the Darek Strychalski Foundation “Zwycięzca” since 2014. The muscular atrophy she’s fighting makes her unable to function normally. So far the Foundation has paid for two stem cell transplantations which, paired with Asia’s strong will and determination, slowly help her to regain physical functionality. Let’s give the floor to our heroine…
What’s the deal with dystrophy? Muscular atrophy – that’s something easier to imagine, but reluctantly. Reluctantly was how I acknowledged that this is the state of my health and life, but I’ve never made peace with it. And I never will. Sometimes I need to be more inquisitive than specialized doctors, because my illness is very rare and it’s not really obvious how to treat it. To avoid doing further damage it’s considered better to do nothing. And I’m not going to let my fiery spirit stay imprisoned in a dysfunctional body. I know I don’t need to hike or kitesurf, but when I can’t reach to take a mug out of a cupboard, I need to aim higher. Everything that requires lifting my hands is difficult for me. Sure, you don’t hang curtains every day (I don’t hang them at all), but you brush your hair or teeth every day and that’s difficult for me. Getting out of bed isn’t easy either. You brain sends a signal to your leg, “put the right foot down”, but it’s as if the signal never reached the destination. You want to move, you try, you get all tense, you lose a lot of energy and to no avail. It’s about defeating yourself. And imagine they joy when you manage to do so! Oh my! And you want more, because small victories are motivating. And it’s hard to admit how happy you are if you get out of the bath on your own or put your socks on without any unexpected cramps.
Facioscapulohumeral muscular dystrophy (FSHD) – neurological, autosomal dominant inherited illness attacking the muscles. I got it from my dad. 50% chances to inherit it – I “won”, my brother didn’t.
It manifests itself in adolescence with muscle weakness and fatigability. I had to give up PE classes as a teen. In my town there was no doctor capable of diagnosing me appropriately, I lost a lot of time. I decided to fight for myself again when I moved to Poznań to study. There I met a lot of committed physiotherapists and I learned about the promising stem cell transplant. Luckily it was already introduced in Poland, but, as always, money was a dead end. But the therapy isn’t about getting the transplant and becoming immediately healthy. You get the results through tedious rehabilitation and trainings. That’s why I started to work out regularly long before I decided to undergo the operation. My body had to get used to the physical effort. But it was only the rehabilitation after the transplant that provided me with some visible effects and muscle growth! I’m 184 cm tall and I used to weigh less than 62 kg. Now, a year after the transplant, I weigh 70 kg and I have much more strength. I’m stable and I don’t stumble over my own legs on the street. I’m not afraid to leave my house anymore in case I trip and bruise myself again. And trust me, it’s quite a show when someone so tall falls over.
Why do I fight? A bit out of spite for all these theoretical doctors, a bit out of spite for the system in which rare illnesses aren’t researched, but most of all for myself – it’s the fight for physical functionality, for health, for other people, because when you really want something, you can achieve it.
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