Having myoadenylate deaminase deficiency, an “invisible disability” means that many things change. Just because the changes are not easily seen doesn’t mean they aren't occurring. Most people don't understand much about my disease and its effects, and of those who believe they understand tend to only have a rough generalization. In the spirit of informing those who wish to understand I will share my own experiences, not everyone else’s assumptions. While some of the information out there is quite accurate I fell in between the cracks because most diagnosis are made in middle aged adults. Being diagnosed at age 9 I was only the 33rd child ever to be diagnosed. The disease I have effects the use of ALL my muscles. I found Out about my disease when my eyes could no longer track a line of text to read (After about 2 years of constant testing). I still have vision problems even though I have been in vision …show more content…
I must spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too. There is A difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years with no end in sight. I can't be miserable all the time, in fact I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. Remember to stand up for five minutes, sitting up, walking, thinking, being sociable. etcetera doesn’t necessarily mean that I can for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my