When I was three I got this viral thing and that was when doctors noticed there was something wrong. Two years later, when I was 5 and my bother was 7 we were diagnosed with the same thing. I have two invisible disabilities called Retinitis Pigmentosa (RP); or Retinal Dystroph; and Postirial Column Ataxia (PCA), which the doctors think may be related. I say invisible because they are something that most people can’t see I have, but affects my everyday life. I suffer from digestive problems and chest pains and am also short sighted and have lost part of my peripheral vision. RP can also cause bowel problems, unsteadiness, loss of balance and curvature of the spine. RP is causing my eye to slowly deteriorate. As there isn’t much known about this rare illness, doctors are not sure if I will loose my sight. There is no known cure at the moment. My eyes strain in strong sunlight and when I am reading, but my glasses do help. Brett and I both have slightly different symptoms. He’s lost his whole peripheral vision and is very unsteady. It’s not hard to live with any more. When Brett and I were little we used to close our eyes and pretend we were blind. Then, when we were old enough to understand, we used to let it get us down. Now it’s not so bad. It can still get us down but we’ve learnt to live with it. What is harder to live with is how other people react to something they can’t see. Because of the PCA, Brett and I can’t feel anything from our knees down. The smaller nerves that branch off the main ones are damaged, so we can’t feel pain here. Some young people have found out about our illness and thought it would be funny to kick us in the legs because we can’t feel it. It makes me feel really angry, especially when they hurt my brother. Because of the condition I have, it makes me unsteady, and I think that may be why I am so quiet, but I think other young people think I am a clumsy goody two shoes. I don’t always see people coming towards me, because I am short sighted and have lost part of my vision, so a lot of people don’t think I’m watching where I’m going. Being quiet I wait for others to make the first move and I don’t like people knowing about my condition. I have to take extra care of myself and it helps when others are looking after me too. Just so I don’t get hurt, and I really appreciate that. I’m lucky enough to have lots of support from good friends and family around me. My Mum gives me loads of support and had been there from the beginning. I know she has found it hard and interviewing her for this article showed me that she has had to overcome almost as much as I have. I didn’t get much support from my biological dad; I haven’t seen him for five years now, but my step dad gives me loads of support. RP is a progressive illness. Different symptoms show up at different times. The doctors don’t know if we will go blind and sometimes I worry about it. At the moment my eyes are staying stable. I wish there was more research done into finding a cure for RP, perhaps one day there will be. I’d like other young people to know from reading this that there are many invisible disabilities, not just mine. So please think twice about teasing people who may find some things difficult or may be quite because of things you can’t see. Don’t judge a book by its cover, its pages are far more interesting. Feature by Jessica Senior If you have an invisible disability that you'd like to share. Write to cubeweb@ssclc.net To top of page |