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New Stories: Daphne, Deedra And Ellen

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#1 Judy Devlin

Judy Devlin

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Posted 29 November 2006 - 10:21 AM

Ellen: Interstitial Cystitis with Bladder Removal I feel like I have hit a dead end. My quality of life is worse than ever...

Deedra: Linear Scleroderma In the course of two years the scleroderma spread from under my knee to the top of my thigh...

Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient By early 2005, she began to exhibit Raynaud's phenomenon. She was also having swelling in her face, hands and feet...

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network

#2 jefa


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Posted 02 December 2006 - 01:53 AM

Sheesh, what a story (Daphne: Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome Overlap Patient ). I know that the world is full of competent doctors and specialists working to understand, treat, and potentially eliminate these horrid diseases, but this story's accounts of repeated missed opportunities sounds all too familiar. Even though Daphne was a nurse and working closely with her mother's health carers, there were just too many events that seemed incompetent. She is lucky to have made it through the ordeal. It is so important that we educate ourselves as much as possible and insist that our medical professionals are giving us the right care for our own circumstances.

#3 Shelley Ensz

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Posted 02 December 2006 - 03:42 PM

Hi Jefa,

Yeah, I was amazed by it, too. I really kept on expecting the next line of Daphne's story to be "and then she died"...over and over again. My jaw was hanging open to realize she is still alive. Truly astounding what a person can survive and still live to tell about it.

I was a bit twixt and tween. There was awful medical care to cause a lot of it, but on the flip side there had to be incredibly great care to have pulled her through all of it. And she and her family must have absolutely incredible determination.

For those who missed it, Daphne's story is at:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.