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Scleroderma doesn't have me!

Jul 13, 2026

By: Helene


In 1996 I was diagnosed with Systemic Diffuse Scleroderma. I had never heard of it, couldn't spell or pronounce it. Fast forward 20 years and I can say that Scleroderma has been a blessing in my life, not a curse.

In 1996 I almost immediately was hospitalized after my diagnosis with renal dis function...my kidneys were starting to fail. It was truly down hill for the next 4 years. I tried every medication, therapy, treatment and nothing. No relief, almost lost my eyesight due to medically induced cataracts, went down to 83 lbs. and was taking 48 pills a day. I was slowly dying. I cried, I prayed and I felt like my life was over. But I was a single mom with 5 children from 9-24. I had to live for them! So, with the help of God, my family, an amazing Doctor of Chinese medicine and my will to live, I climbed over every obstacle and took my life back. Was it easy? Oh no, far from it. I had to learn to walk, talk and become self-sufficient all over again. It took 7 long, hard and painful years of therapy.

Today I am 65 with 9 grandchildren and an incredible husband who loves me in spite of my disease, my disabilities and my shortcomings. I have been leading a support group since 1996 and my job is to bring hope to others suffering from this dibilitating disease.

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4 comments
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<p>Which support group are you leading? &nbsp;I am active in about 14 the last time I checked and am probably a member!</p> <p>Here is my backstory:&nbsp;<a href="http://sclerodermainfo.org/pdf/Ed.pdf">http://sclerodermainfo.org/pdf/Ed.pdf</a></p>

Commented 10 years ago Ed Harris 10
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<p>Awesome :)</p> <p>here is my experience: http://www.eurordis.org/news/living-with-scleroderma-and-raynauds-disease</p>

Commented 10 years ago Nicola Whitehill 10
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<p>I'd like to hear more about the Chinese medicine please</p>

Commented 10 years ago A Hood 10
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<p>&nbsp;Yes, please share the protocols and treatments used in regards to Chinese Medicine. Thanks!</p>

Commented 10 years ago Misty 13

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