Thursday, September 1, 2011

Another Star in the AI Hemisphere

Venus Williams, a world-class professional tennis star, made headlines when she announced yesterday that she was pulling out of the US Open in the second round.  She started an absolute media frenzy when she published a statement today that she had to bow out of the tournament because of Sjogren's Syndrome, an autoimmune disease that shares some symptoms with RA and is often a secondary diagnosis for patients of its more debilitating cousins like Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis.

I don't want to play "who has the more serious AI disease" - I imagine a diagnosis of SS, especially for a professional athlete, is equally crushing as a diagnosis of RA.  Both are incurable, both can be extremely damaging, and both can be extremely difficult to manage.

I hope for Venus treatment is quick and effective.  I hope her SS is not a portent of other, more dreaded AI diagnoses on the horizon, as it is for so many.

I also hope, quite selfishly, that the buzz in the media brings a little desperately-needed attention to the plight of those with AI diseases, which are often "invisible" for years until their dirty work becomes apparent to the casual observer.

I hope that valid, factual information about AI diseases will find its way into the national consciousness.  We can hope that before the media loses focus, opportunities for dialogue will arise and advocates for the AI community will have a moment to speak.

There have been many public figures who have chosen not to share their private pain, and I respect their choices.  There have been some who have chosen to share their carefully spun stories to sell books or new pharma products, and I don't particularly respect their choices.

The autoimmune community needs our Michael J. Fox, someone who can capitalize on his fame to shine a light, educate, and advocate for research into the origins and a cure.
I hope that Venus Williams, this beautiful, talented, articulate woman, feels compelled to be our advocate.  I guess you could say I'm wishing on a star.

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