My Life with Scleroderma

Scleroderma is a rare, chronic autoimmune disease which afflicts an estimated 300,000 Americans. Scleroderma is classified as an autoimmune disease. This means that a persons immune system works against itself. The normal immune system protects the body by fighting off foreign invaders such as viruses and infections. In an autoimmune disease, the immune system mistakes a persons own tissues as foreign invaders and sets up a protective attack that backfires to cause problems.

Only 5,000 children in America are diagnosed with Scleroderma. I was one of them.

Patients of Scleroderma are always welcome to contact me.

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[joanmurgita66]

my daughter has it and has so meny "spots on her its all over but her doctors said no drugs have been proved to work

[FlickeringHalo]

@joanmurgita66 Well those doctors are wrong. They may have meant that no single treatment works for every single patient, but there are medications that can stop the progression or even reverse it.

[minicopilot]

I knew nothing of this disease until 2 days ago when a loved one was diagnosed with diffuse scleroderma. So far the white fingers and toes and swollen fingers are the symptoms long with fatigue and aches in the limbs. I was never a religious person but I'm praying everyday!!! Great video. Everyone be strong. I'm trying to be as difficult as it may be!

[laurenpaigebryan]

I loved your video, I also have Scleroderma. I was diagnosed when I was 2 years old. I love hearing other peoples stories because this horrible disease effects everyone so differently. Mine is more skin related, it covers almost my entire body. Mine is starting bother me more as an adult, I lost my leg due to it when i was 5. Keep your head up. Beautiful video!

[AMCKEJB3]

@FlickeringHalo OMG THINK ABOUT WHAT YOU SAID REALLY DO YOU THINK IF THERE WERE MEDS THAT WOULD STOP IT OR REVERSE IT WE ALL WOULD BE ON THEM AND CHILDREN AND ADULTS WOULDNT BE SUFFERING FROM THIS OR DIEING BECAUSE OF WHAT SCLERODERMA DOES THERE ARE NO MEDS THAT STOPS IT OR REVERSE'S IT ONLY MEDS THAT SLOWS IT DOWN AND IT DOESNT WORK FOR EVERONE I HAVE THIS I KNOW I HAVE BEEN IN THE FIGHT SENCE I WAS 6 IM 41 NOW SO IF THERE WERE THOSE MEDS DO YOU THINK ANY OF US WITH THIS WOULD BE SUFFERING

[AMCKEJB3]

@FlickeringHalo there are no medication that can stop the progression or even revers it there are only meds that can slow it down and that only for some because some dont respond to any of the meds this is a horrable thing and i have it so if there was a medication that would STOP IT OR REVERSE IT EVERYONE WHO HAS THIS WOULD BE ON IT AND NO ONE WOULD BE SUFFERING BECAUSE OF IT AND CHILDREN AND ADULTS WOULDNT BE DIEING BECAUSE OF IT !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!­!!!!!!!!!!!!!!

[AMCKEJB3]

hello im 41 years old now and at the age of 6 i got sick at 12 is when i found out what i had and also was told by the doctor i would die by the time i was 15 because of it  well 41 now and i now have two kinds of Scleroderma the specialist i see now has been working with Scleroderma for 25 years and im the first he has ever seen who has developed two forms of it yeah me not anyway hang in there i know what your going through

[totallytang2010]

I have a form of this disease… over the last few years I have been on Methotrexate, Cellcept, Prednisone, and intravenous Solu Medrol… I feel your pain… it took my doctors several years before they realized that I was not being dramatic… and there really was something wrong with me… every Fall I watch as my finger swell up and my whole body starts to hurt… I am sick all the time from my meds…

[heynow100101]

Great video. My mom Was diagnosed almost 2 years ago with it and she is doing great now. Make sure you keep your head up sweetheart.