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March 2004 ISN News

Voices of Scleroderma Volume 1: Featured Story #43 of 100

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

Voices of Scleroderma Volume 1: Featured Story #42 of 100

Pam: Systemic Scleroderma for 27 Years (Australia) I have had several amputations…

Voices of Scleroderma Volume 1: Featured Story #41 of 100

Melissa: CREST Plus I would love to hear from anyone who knows about CREST…

New Page: ISN Photo Repository: Raynauds (Joyce)

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: ISN Medical Advisory Board

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: Book Signing in Edina, Minnesota

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.

Voices of Scleroderma Volume 1: Featured Story #40 of 100

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…

Voices of Scleroderma Volume 1: Featured Story #39 of 100

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: ISN Italian Translator

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: Sr. Support Specialist of Sclero Forums

Heidi Nolan has been promoted from ISN Support Specialist to Senior Support Specialist of ISN's Sclero Forums. Posted 3-19-04.

Shelley Ensz: Book Signing in Edina, Minnesota

Shelley Ensz, ISN President 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.

Voices of Scleroderma Volume 1: Featured Story #38 of 100

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…

Voices of Scleroderma Volume 1: Featured Story #37 of 100

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure…

ISN: Voices of Scleroderma Book Series: New PDF Brochure.

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.

Voices of Scleroderma Volume 1: Featured Story #36 of 100

Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed…

Voices of Scleroderma Volume 1: Featured Story #35 of 100

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…

Voices of Scleroderma Volume 1: Featured Story #34 of 100

Denise: Systemic Sclerosis and CREST It all started when I was sixteen years old. I was having awful pains in my hands and feet…

Voices of Scleroderma Volume 1: Featured Story #33 of 100

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…

Voices of Scleroderma Volume 1: Featured Story #32 of 100

Debbie: CREST Here's a copy of a letter I sent to my rheumatologist… Posted 3-8-04.

ISN: What in the world is Scleroderma? New PDF Brochure.

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. is New ISN Project Manager

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.

Voices of Scleroderma Volume 1: Featured Story #31 of 100

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…

Voices of Scleroderma Volume 1: Featured Story #30 of 100

Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career…

Voices of Scleroderma Volume 1: Featured Story #29 of 100

Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…

Voices of Scleroderma Volume 1: Featured Story #28 of 100

Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years…

Go to Website News: February 2004
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

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