Scleroderma doesn't have me!

Dec 2, 2

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
0

Which support group are you leading?  I am active in about 14 the last time I checked and am probably a member!

Here is my backstory: http://sclerodermainfo.org/pdf/Ed.pdf

Commented 7 years ago Ed Harris 10
0

Awesome :)

here is my experience: http://www.eurordis.org/news/living-with-scleroderma-and-raynauds-disease

Commented 7 years ago Nicola Whitehill 10
0

I'd like to hear more about the Chinese medicine please

Commented 7 years ago A Hood 10
0

 Yes, please share the protocols and treatments used in regards to Chinese Medicine. Thanks!

Commented 7 years ago Misty 13

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