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| November 2008 ISN Donation and Website News |
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| Online Survey: Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases |
| Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases. If you are a college student diagnosed with a(n) autoimmune related disease(s), then you may be eligible to participate in this study. It's an anonymous on-line questionnaire asking about your health related academic problems, needs, perceptions, and experiences of living with an autoimmune related disease while attending college. Must be 18 or older and currently enrolled full time or part time in a 4-year institute of higher education diagnosed with one or more autoimmune related diseases by your health care provider. Researcher Lauren Boyle, Indiana University. Posted 11/21/08. |
| ISN Request for Photos of Scleroderma Mouth Involvement |
 The International Scleroderma Network has an urgent request from a dental hygienist researcher for photos of scleroderma oral manifestations. They would like high resolution photos of the head, neck and more specifically the oral cavity of an individual with systemic scleroderma. Please inquire or submit photos by email to shelley-ensz@sclero.org. Posted 11/20/08. |
| Research Report: The Experience of Scleroderma, Stressful Life Events, Attachment, Post Traumatic Stress Symptoms and Resilience |
| Short Summary of the Findings. The purpose of the current study was to investigate the relationship between psychological factors that may impede functioning of the immune system and Scleroderma. These factors included stressful life events and the aspects that may result from exposure to these stressors, such as insecure attachment, anxiety disorders, (such as post traumatic stress) depression and resilience. Bond University Faculty of Humanities and Social Sciences, Bond, Australia, Researcher Karen Kearney. Posted 11/20/08. |
| Welcome Hilda Broome, ISN New or Renewing Member |
| The International Scleroderma Network welcomes Hilda Broomeas a new or renewing member. ISN Email memberships are $25 and Postal memberships are $35. Members receive the wonderful SCLERO.ORG Newsletter! Posted 11/14/08. (Also see: Donate/Join/Shop) |
| ISN Vehicle Donation Program for United States and Canada! |
 Donate Your Vehicle! Free towing. Fast service. We accept cars, trucks, motorcycles, snowmobiles and boats! Call Toll Free 1-877-535-5277. Donate for "ISN". International Scleroderma Network, www.sclero.org. Posted 11/07/08. (Also see: Donate/Join/Shop) |
| Welcome Doris Razo, ISN New or Renewing Member |
| The International Scleroderma Network welcomes Doris Razo as a new or renewing member. ISN Email memberships are $25 and Postal memberships are $35. Members receive the wonderful SCLERO.ORG Newsletter! Posted 11/07/08. (Also see: Donate/Join/Shop) |
| Welcome Susan Le Gendre, ISN Support Group Leader for Trinidad and Tobago |
 Susan Le Gendre: ISN Support Group Leader for Trinidad and Tobago. I started doing research because I decided to start a non-profit company here at home. I found the nonprofit International Scleroderma Network (ISN) and e-mailed Shelley Ensz right away. She accepted me as an ISN volunteer and Group Leader for Trinidad and Tobago. Posted 11/07/08. |
| Scleroderma Can Koozies Now Available! |
 Scleroderma Can Koozies! Keep your hands warm with cold pop cans, $2.50 each, minimum order of 4 ($10), please. Reposted 11/07/08. |
| Venezuela Revista: Esclerodermia y Algo Mas (FLASH Document) —Gratis! |
 (Español/Spanish) En la Grupo de Apoyo de Venezuela contra la Esclerodermia: Revista:Esclerodermia y Algo Mas (FLASH Document) —Gratis! Esta es una publicación en español, 41 paginas.
(English) The Scleroderma Support Group of Venezuela (which is an affiliate of the ISN) has published a 41-page online FLASH magazine, in Spanish, Escleroderma y Algo Mas, which is free! Posted 10-29-08. |
| Tackling Scleroderma! |
| Tackling scleroderma through donations, memberships, books, brochures and awareness bracelets:
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Join/Shop/Donate! |
| Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button... |
| (Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo... |
| (Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años. |
| Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite... |
| (Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito... |
| Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for... |
| (Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on... |
| More New Stories: November 2008 |
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. |
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| Go to ISN News: October 2008 |
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