There is a misconception that having a rare disease gets easier the longer you have it. In reality, you get more fatigued and behind with your life. ~Patricia C.
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
Our society thinks it takes a special kind of person to care for someone with a rare disease or disability. Nope. It just takes a kind of person who displays basic human qualities and hasContinue 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