Hello, my name is Judith Thompson Devlin, and I am Chair of the ISN Archive Committee.
As part of my archivist duties, I am compiling patient and caregiver stories from the SCLERO.ORG website for the Voices of Scleroderma book series. I am also an ISN Story Editor for the SCLERO.ORG Website stories.
I was diagnosed with CREST in 1991, and retired on disability in 1992. I have seven siblings, and a married daughter, and grandson. I live in Concord, New Hampshire.
I recently published my third novel, Mind Blindness, a political thriller. I enjoy reading, writing, my computer, politics, and volunteering for ISN. I have a passion for finding a cure for scleroderma.
I enjoy the camaraderie, support and friendships that have come as a result of volunteering with this awesome group of people. This has been the best medicine for my body, heart and soul! 'Just what the doctor ordered!'
I am also the ISNmart Guide. I developed and manage the new ISNmart online shop on CafeShops, which features ISN and scleroderma imprinted promotional items such as tee shirts (all sizes up to 3-X-Large), clocks, teddy bears and aprons. New designs and items will be added to the shop regularly so please visit the store often and promote the ISN and scleroderma everywhere you go!
My personal story is online, Judy Rose Thompson Devlin: CREST. In October 2010, I retired as an ISN volunteer for health reasons. I am in a palliative care program, which is wonderful. I have lobbied for inclusion of information about palliative care on this web site, which my dear friend Shelley gladly added. I hope that everyone gets the care they need at each stage of this disease, and send all my good wishes to everyone.
In a Palliative Care Program, It's Wonderful. The palliative care involves visiting nurses, dietitians, occupational therapists, social workers and 24 hour on call help. The nurses help with pain control issues and prescriptions, vital sign monitoring, wound dressing, etc. The Occupational therapy has given me all kinds of tools to help me adjust to the loss of my right hand and weakness in general since all my muscles have atrophied because of weight loss. And the nurses are wonderful and basically only do what you want or need them to do and they come to you (No waiting in waiting rooms.) Sclero Forums. (Also see Palliative Care)
Voices of Scleroderma Volume 3 has just been released, with 100 more new patient and caregiver stories! Contributing professionals include Dr. Marco Matucci-Cerinic and Dr. Irene Miniati (on Systemic Scleroderma), Dr. Fernanda Falcini (on Juvenile Scleroderma), Dr. Tafazzul e-Haque Mahmud, Dr. Laszlo Czirjak (on Scleroderma-Like Disorders), Francisco Castellanos, and Carol Langenfeld. Posted 01-24-06.
Judith Thompson Devlin, co-editor of the Voices of Scleroderma book series, signed and shipped 125 complimentary copies of Voices of Scleroderma Volume 2 books, which were mailed out on September 16, 2004. These signed copies of the first edition were sent to everyone who contributed a story or worked on Volume 2. This tremendous book features top notch medical and support information for scleroderma. Posted 09-22-04.
Voices of Scleroderma Book Series. Editors Judith Thompson Devlin and Shelley L. Ensz for the International Scleroderma Network.
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...
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!
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: Cindy Dorio, Shelley Ensz, Margaret Hollywood, and Michele Maxson.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
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