I’ve had people think that changing my food and/or diet will completely “cure” my rare disease, which is not the case.~Jenn S.
My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interfered with. Don’t be disabled in spirit as well as physically.~StephenContinue reading
People that don’t have to live day-to-day with multiple, rare, chronic and degenerative diseases like I do don’t understand that it’s a full-time job, even though I am unable to work. It’s a constant battleContinue reading
These people that are pitied or being asked to suffer in silence don’t want to suffer, don’t see themselves as pitiable, don’t see themselves as victims – see themselves as citizens, participants in the process,Continue reading
I want the general public to know that rare diseases are not contagious. But I want people with rare diseases to now what is contagious is the goodwill that you can spread by sharing yourContinue reading
There are many things that come to mind when I think of what it’s like living with a rare disorder. The most important thing is that no matter what disease or disorder someone has, atContinue reading