'Every day I would wake up to a reminder, slapped across my face, that there was something wrong with me.'
, but adults can get it, too. And as it often goes with rare diseases, the cause of PRS remains unknown, and ultimately, there is no cure.
My fight with PRS started when I was in my early 20s. And while the physical transformation has been relatively painless, emotionally it's been a different story. You see, PRS didn't just eat away at my flesh and bone, it alsoEvery day I would wake up to a reminder, slapped across my face, that there was something wrong with me, and the world did not let me forget it.
I never knew when these blows were going to come, but they always did, swiftly, silently and with a force that never failed to knock me off my feet. With each of these interactions, and all the questions and stares I've gotten through the years, I started to believe that there was something wrong with me and everyone knew it. I became ashamed of my own physical appearance. I felt betrayed by my body. I felt so, so alone.
Finally, after years living like that, I took the time to look at myself — and I mean really look at myself — and try to understand my relationship with this disease. Ultimately, I asked myself,"Who have my actions been serving?" And you know what? It wasn't me.
It's taken years for me to get to this point, but I feel like I'm finally ready to own my narrative, and let people know exactly what this is, I'm ready to be honest, and if by doing that I can makes even one person that suffers from PRS or anyMy journey with Parry-Romberg Syndrome is not over, and quite frankly I don't know if it ever will be — that's what scares me the most, not knowing if it will get better, or worse.
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