|
|
|
|
January 2010 ISN Donation and Website News |
|
|
| Do you have diffuse scleroderma and are between the ages of 18 and 69 (inclusive)? |
| The SCOT Trial (Scleroderma: Cyclophosphamide Or Transplantation) is still recruiting patients who have diffuse scleroderma. The SCOT trials are comparing the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma. (Also see: SCOT Trial) |
| Do you have digital (finger) ulcers? |
| The scleroderma DISTOL trial is still recruiting patients who have active digital ulcers. Reposted 1/4/10. (Also see: DISTOL Trial) |
| Actelion Pharmaceuticals is Tackling Scleroderma Now! |
 The International Scleroderma Network thanks Actelion Pharmaceuticals for their generous grant to tackle scleroderma and pulmonary hypertension now! Reposted 1/4/10. |
| ISN is Tackling Scleroderma Now, Thanks to Recent Donors! |
 The nonprofit International Scleroderma Network, home of sclero.org, thanks the following members and supporters for their donations or purchases of scleroderma books, brochures, newsletters, memberships, and awareness bracelets: Anonymous, Dianne and Vasiliki, Carol Sheehan, Carrie Maddoux, Special People in Need, James R. Seibold, M.D., Kay Bierley, Arnold Slotkin, Mary Short, Linda Reynolds, Vanessa Collier, Goodsearch, Sandra Jaser, Kathy Baxter, Cissy Hernandez, Amanda Woods, Susan Lide, and Actelion Pharmaceuticals. 12/23/09. (Also see: Sclero Shop/Donate) |
| The nonprofit International Scleroderma Network thanks Debra Barrales for her Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. Posted 01/02/09. (Also see: Donate and Earl Manns) |
| New Personal Stories |
| Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success... |
| Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue... |
| Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye... |
| Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse... |
| Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen... |
| More New Stories: May-July 2010 |
Submit Your Patient, Caregiver or Survivor Story in:
Arabic | Dutch | English | Español | Deutsche (German)
Italiano | Polski | Russian | Spanish | Turkish | Other Languages |
| We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes. |
|
|
| |
| Go to ISN News: December 2009 |
|
|
|
Get our free Sclero e-Newsletter!
