It seems September is the month for medical conferences after the relaxation of the summer. In addition to the SCDC conference, I also attended BreatheCon, the patient-run conference for individuals with cystic fibrosis.
In many of the open chats, one theme consistently recurred – it was wonderful to be around people who “got it.” Although it seems everyone in the world has heard of CF, it is actually a rare disease with only approximately 30,000 patients in the US and about 70,000 worldwide. The familiarity of the disease is more a function of the advocacy of the Cystic Fibrosis Foundation than the prevalence of the disease.
Because of the rarity of CF, patients are usually only interacting with people who don’t really understand:
· How tired they feel
· What it’s like to be frequently short of breath
· The embarrassment of a chronic cough
· The anxiety caused by a degenerative disease
· The pain of gastrointestinal and respiratory complications
· What it’s like to check for blood after every cough
· The added stress of fitting breathing treatments into an already busy day
And so many more things…
As one participant put it, “Here, I’m not the freak in the room!”
Rare diseases take an obvious toll of physical health, but there are so many other dimensions, such as feeling alone in your situation, to living with one of these conditions.