World Scleroderma Day 2015

Note:  If you haven’t seen the Wayne Brady episode of Chappelle’s Show, you won’t get the reference below.  (Watch Now)

 

Every year, tens of thousands of patients around the world, get together on social media to inform the masses of scleroderma.  What is scleroderma?  Scleroderma is a progressive, degenerative disease like Lupus, rheumatoid arthritis and … marriage.

We have come a long way in research.  Scleroderma patients are living longer, thanks to the hard work of researches, patient advocates and doctors around the world dedicated to helping scleroderma patients live longer, fulfilling lives.  Unfortunately, that is still a minority of patients.

There was a time that when a doctor said to a patient, ” You have scleroderma”, and it was followed by, “Get your affairs in order.”  Scleroderma was a death sentence.  Things have improved for patients, but I’m not going blow smoke up your a** and tell you it’s all unicorns and rainbows, because it’s not.  Unless by rainbow you mean an arch of shades of brown in the sky to warn you of the sh*t-storm ahead ( an anti-rainbow, if you will); and by unicorn, you mean one of the Four Horseman of The Apocalypse proclaiming,”Taste the rainbow, bitches. ”

Scleroderma is considered an Orphan Disease.  300,000 Americans have the disease.  To me, it’s less an “orphan” and more of a “Son of a Bitch”.   There is no cure.   Patients meet with their doctors, and weigh the options of taking medications with side effects that include lymphoma or sudden death versus, not taking medication.  The cure sounds worse than the disease, doesn’t it?  Well, risking sudden death and cancer to get medicine to stop the progression of scleroderma, is usually the better choice.  Yes, scleroderma is that bad.

It’s hard to explain what scleroderma does, that causes my body’s immune system to attack itself, but this is what I think it would go down:  It would be like being driven around by Wayne Brady.

I’m in the back seat  of a car, and see Wayne Brady driving and a frightened Dave Chappelle in the passenger’s seat.  Wayne Brady stops the car abruptly, orders us out of the car, gives us spiked baseball bats, points to what he wants to destroy, and we do it, because Wayne Brady is one scary m*ther f**ker.  Then we get back in the car and drive until Wayne Brady sees another spot of town he wants destroyed,. Dave Chappelle and I are ordered out of the car by a screaming Wayne Brady.   At one point, he asks Dave Chappelle and I, if he, and I quote, has “ to choke a bitch.”  

So on July 1st, the teal of scleroderma awareness will fade into the next cause’s color, but not for scleroderma patients and those who love them.  . I understand that scleroderma is not the only progressive, deadly disease out there that needs to be cured, but since you’re here right now, take the time to learn about it by following the links, and sharing what you know.

Scleroderma Research Foundation

 Scleroderma Foundation

Bounce to a Cure

 

 

 

 

If you are “lucky” enough to have the kind of scleroderma that progresses quickly