A disease that affects 300,000 people and nobody knows what it is. Why is that?

I have been asking myself that now for more than 5 years and haven't found the answer but I think it is because nobody will listen to those of us that suffer from it. I have talked to many TV stations and only one cared enough to do a story and that was KOCO in OKC. You see a year ago our son died of the disease. Scleroderma-literally it means hard skin, which means its only an inconvenience to those that have it...right?  Wrong- It can affect any tissue including vital organs.Heart, Lungs, Kidneys

What we need is for Family Doctors to more about it so that its not misdiagnosised and for the public to understand that this is an autoimmune disease like lupus, MS, and many other diseases and that we don't know what causes it and at this time there is no cure.It can effect your children, men and 80% of those affected by this are women. We need research.....we need to help families suffering through this and we need the ER's, medical clinics and your family doctor to know it is.

We have taken the first step, our state is now a chapter of Scleroderma Foundation and we are having our first state wide Stepping out to Cure Scleroderma in OKC at Earlywine Park Track. When: June 21,2008 @ 8am with registration beginning at 7am.

How can you help? Go to Scleroderma Foundation.com and go to Stepping out to Cure and find a walk  near you. Join us or go to www.firstgiving.com/scl-ok and make a donation so we can find a cause and then a cure.  Your help is needed.  Please don't let us down.

Thanks for your help

Donna Roberts In memory of Jonathan Roberts (6-26-1972/4-25-2007.

donnarthur:

A disease that affects 300,000 people and nobody knows what it is. Why is that?

I have been asking myself that now for more than 5 years and haven't found the answer but I think it is because nobody will listen to those of us that suffer from it. I have talked to many TV stations and only one cared enough to do a story and that was KOCO in OKC. You see a year ago our son died of the disease. Scleroderma-literally it means hard skin, which means its only an inconvenience to those that have it...right?  Wrong- It can affect any tissue including vital organs.Heart, Lungs, Kidneys

What we need is for Family Doctors to more about it so that its not misdiagnosised and for the public to understand that this is an autoimmune disease like lupus, MS, and many other diseases and that we don't know what causes it and at this time there is no cure.It can effect your children, men and 80% of those affected by this are women. We need research.....we need to help families suffering through this and we need the ER's, medical clinics and your family doctor to know it is.

We have taken the first step, our state is now a chapter of Scleroderma Foundation and we are having our first state wide Stepping out to Cure Scleroderma in OKC at Earlywine Park Track. When: June 21,2008 @ 8am with registration beginning at 7am.

How can you help? Go to Scleroderma Foundation.com and go to Stepping out to Cure and find a walk  near you. Join us or go to www.firstgiving.com/scl-ok and make a donation so we can find a cause and then a cure.  Your help is needed.  Please don't let us down.

Thanks for your help

Donna Roberts In memory of Jonathan Roberts (6-26-1972/4-25-2007.

  I feel your pain Donna, my son has serious plaque psoriasis, literally turning him to stone, also an autoimmune disease, only thing that helps is shots of medicine that cause cancer. He took shots for a year, his white cell count got really out of whack, almost developed leukemia before they realized it, now he is unable to use serum so he uses creams and such, doesn't help. It also causes plaque in the heart, eyes, brain, muscles etc, my son is 24 now, has never dated or had a normal life because of this disease, he can't go swimming, wear shorts or go shirtless, when he moves his skin breaks and bleeds, he leaves a white snow storm everywhere he goes, it is a horrible disease, and there is no known cure, it is so sad to hear your 13 year old son acknowledge the fact that he will live a very short life, knowing there is nothing you can do to help him. If I could I would take the disease myself so he could live a long, normal life. I admire you so much for trying to help others who suffer from this disease. Bless you......