I’m sorry to hear that. I’m afraid I don’t know much about you condition but after reading some information about it on the internet, it seems that there is quite a lot of research at the moment looking for treatments in areas like gene therapy and stem cells.
Medical research is moving very quickly and, although its hard to predict which conditions we’ll be able to treat in the future, more and more are becoming treatable all the time. I really hope scientists find a way to treat your condition 🙂 . Sorry I can’t give you a better answer