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.

The Gad About Town

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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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 13 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Six years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 6 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on February 21, 2015, in Reblogs and tagged , , , , , , , , , , , , , . Bookmark the permalink. 1 Comment.

  1. Thank your for introducing me/your followers to another wonderful, informative chronic pain blog!

    Liked by 2 people

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