It’s sad that we need to set a “DAY” aside to recognize something as important as rare diseases (and grandparents, secretaries…).
Feb 28 is National Rare Disease Day, NORD, notes one of my favorite bloggers, Laurie Edwards (achronicdose). She should know. She lives with rare disease.
The goal is small: Raise public awareness (and then maybe get funding for research).
Along the lines of rare diseases. Ask someone you know, anyone who doesn’t have a chronic illness, if he/she can name an autoimmune disease (AD)? According to The Autoimmune Epidemic (simply my most favorite resource because she gives hard, scientific data), surveys show that 90% of people can’t come up with a single one.
And here’s another stat — from the book of course — 1 in 12 Americans have an AD. Ask a random person about cancer (1 in 14 Americans) or heart disease (1 in 18 Americans) and they’ll share what they just read in Newsweek, heard on CNN last week or their best friend, Susie’s story. But ask that person, what is lupus (MS, ulcerative colitis or crohn’s — all in the top 7 of AD diseases), and you’ll get crossed eyes. So much for rare being the only reason for lack of awareness or research funds.
Along the lines of not knowing much about AD. There’s a common misunderstanding and it really gets my goat (is that really an expression or did I just make it up?). Stress creates or makes worse autoimmune disease. I’ve struggled with this since my multiple sclerosis (MS) diagnosis almost 30 years ago.
A colleague asked, “Isn’t that a disease of the nervous system? Boy, this job probably brought it on — it’s so stressful.” Huh? Then why didn’t he and everyone else get sick, too? And why didn’t I get better when I left?
Good news, there’s more scientific evidence (Does maladaptive psychology cause autoimmunity?) to prove I’m right: there’s no evidence to show that stress makes AD worse. “Being sick is stressful and depressing and it’s hard to figure out … which way the arrow flows in general for AD… is it the freaked out chicken or the seriously scrambled egg.” (it’s a humorous as well as a fact laden article).
Read it. Then send the link (better yet, this blog) to your family, friends and especially that supervisor who tells you to calm down so you don’t make yourself sicker!