Rare Disease Day
One of my favorite writer/bloggers, Mark from The Gad About Town discusses the importance of the upcoming Rare Disease Day. He shares his experience with his own rare disease, SMA and how it effects his body.
I live with my own “rare” illnesses like POTS, CRPS and IH to name a few. Many would argue that these are not rare given the estimated number of people living with the same illnesses. In the medical world however, these conditions are so rarely known.
My friend and blogger Mark from The Gad About Town so eloquently explains what it means to have a “rare” illness, and why we share information on occasions like Rare Disease Day.
One friend has antiphospholipid antibody syndrome, which causes blood clots to form in any blood vessel in the body and leads to transient ischemic attacks (TIAs), or what she cheerfully refers to as “mini-strokes.” (Most people who have recurring TIAs call them mini-strokes; my friend has the happy quality of coming away from hers with anecdotes about the experience that make them almost sound like something I want to have, too.)
One of my closest friends has fibromyalgia, a disease of chronic pain with a “here today, gone tomorrow, here again and worse” pattern-less pattern of symptom presentation that sometimes renders her almost breathless with the pain. Everyone experiences physical pain, but a full-body stabbing pain with no traceable cause, and thus not many ways to treat it?
Other friends have multiple sclerosis, one whose symptoms are affecting his balance and control of his legs, and one whose hands are…
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Posted on February 21, 2015, in Reblogs and tagged awareness, Chronic Illness, crps, February 28, Fibro, fibromyalgia, IH, MS, POTS, Rare Disease, Rare disease Day, rsd, SMA, Spoonie. Bookmark the permalink. 1 Comment.