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Scleroderma ISN/Website |
The following story is featured in the ISN's Voices of Scleroderma Volume 1 book. The book has articles by world experts in scleroderma and caregiving, including Dr. Joseph Korn, as well as true personal stories from those affected by scleroderma and related illnesses.
Rouge: Limited Systemic Sclerosis (Italy) I am 35 years old, and up to two years ago I thought I was only suffering from Raynaud's Phenomenon…
Rouge: Sclerodermia Limitata Ho 35 anni e fino a due anni fa pensavo di soffrire solo del fenomeno di Raynaud poi visto le ulcerette sulle dita delle mani
Pam: Systemic Scleroderma for 27 Years (Australia) I have had several amputations…
Melissa: CREST Plus I would love to hear from anyone who knows about CREST…
ISN Photo Repository: Raynauds (Joyce) is a new page showing an stark white attack of Raynaud's in a systemic scleroderma patient. New page 3-25-04.
Dr. Luis Catoggio of the Hospital Italiano in Buenos Aires, Argentina, is a member of the ISN Medical Advisory Board. New page 3-23-04.
Shelley Ensz, Founder and President of the International Scleroderma Network and Co-Editor, signed Voices of Scleroderma Volume 1 books at the Panera restaurant in Yorktown Mall in Edina, Minnesota, on Monday, March 22, 2004, from 10am-2pm. "I was amazed by how many restaurant visitors said they had relatives or friends with scleroderma," she said. Posted 3-23-04.
Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman…
The following story is featured in the ISN's Voices of Scleroderma Volume 1 book. The book has articles by world experts in scleroderma and caregiving, including Dr. Joseph Korn, as well as true personal stories from those affected by scleroderma and related illnesses.
Laurie (Bioteach): CREST Syndrome My first symptoms of this disorder began with Raynaud's when I was in my mid twenties…
Patrizia Palla is a new ISN Italian Translator, who will be doing editing of Italian web pages, story submissions, and brochure translations. Posted 3-19-04.
Heidi Nolan has been promoted from ISN Support Specialist to Senior Support Specialist of ISN's Sclero Forums. Posted 3-19-04.
Shelley Ensz, Founder and President of the International Scleroderma Network and Co-Editor of the book, Voices of Scleroderma Volume 1, will be doing a public book signing at Panera restaurant in Yorktown Mall in Edina, Minnesota, on Monday, March 22, 2004, from 10am-2pm. Posted 3-19-04.
Judy R. Thompson Devlin: Diffuse Scleroderma with CREST He said 1 in 200 people get a disease in their lifetime, and that scleroderma was like having 20-30 diseases at once…
Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure…
The ISN has just released, in PDF format, our Voices of Scleroderma Book Series (English version) brochure. Site visitors may freely read or print this brochure for distribution to their family, friends, classrooms and physicians. They may also use it to display publicly to help raise awareness of scleroderma, and the Voices of Scleroderma book series, in their community. 3-17-04.
Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed…
Don Alfera: CREST, Pulmonary Fibrosis and Sjögren's I entitled this "My Time So Far" since this has been a journey unlike any that I could have ever tried to imagine in my life…
Denise: Systemic Sclerosis and CREST It all started when I was sixteen years old. I was having awful pains in my hands and feet…
Debby: CREST Scleroderma It was then everything added up — that I did not have several different conditions, but rather they were all part of the CREST…
Debbie: CREST Here's a copy of a letter I sent to my rheumatologist… Posted 3-8-04.
The ISN has just released, in PDF format, our What in the world is scleroderma? (English version) brochure. Site visitors may freely read or print this brochure for distribution to their family, friends, classrooms and physicians. They may also use it to display publicly to help raise awareness of scleroderma in their community. 2-11-04.
Joanne G: New ISN Project Manager. Having greatly enjoyed serving the ISN in many capacities, Joanne is delighted to announce that she has recently transferred to ISN project management, where she will be involved in establishing policies, procedures and training materials for various functional areas. Posted 3-5-04.
Cathy: Probable CREST Scleroderma It really starting going bad for me in November of 1999. I work on rural mail delivery and live in Quebec, Canada…
Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career…
Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…
Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years…
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: