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Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
How to Submit Your Story
Share Your Story Here
Our Story Page Format
Advantages of Posting on This Site
This is a Totally Free Service
Story Guidelines
Photo Submissions
Story Submission Form
Story Tip Sheet
How To Submit Story Updates
Share Your Story Here
Scleroderma patients, caregivers, friends, and survivors, and those with similar, related or undiagnosed diseases and their caregivers may post their story on this website. Tributes to caregivers are also accepted and encouraged.
Your page will have its own special link, which you can share with others in any way you want. Some ideas are signing all your emails with the address, posting the link in your group's newsletter, or even including it on your business cards.
Scleroderma webmasters who submit their personal story here will have their webpage linked on their story page, to encourage traffic to their website.
Our Story Page Format
Your story page will basically look just like this one. It will have the ISN and Scleroderma from A to Z logos at the top, and menu buttons on the left hand side. There will be the support menu links at the top of the page. Your story will be in this area, and in this typeface.
You may submit a photo to be included on your page. We will create original graphics (photos, drawings, or paintings) for your story. You may request a change in the graphics on your page or submit photos or voice recordings for your page at any time.
Posting Your Story on This Site Gives You
High Visibility: This is a high-traffic web site with a global audience.
High Website Standards: We are openly committed to protecting your privacy and to maintaining the highest website standards.
Your Page Easy to Find: The advantage of our "fully integrated" approach is that visitors to this website will be able to easily find your story from anywhere within this website.
Unique Art: We create custom graphics (photos and/or artwork) for every story, from scratch, with you and your story in mind, so that your page will have its own unique look, despite our standard page layout.
Fast-Loading: We optimize our graphics to keep your page fast-loading, which is very important to your story readers who have older computers or who pay high long-distance access fees.
Safeguarded for Posterity: Your story will be safeguarded for posterity here, as plans are also in place for this website to be maintained through the nonprofit International Scleroderma Network.
This is a Totally Free Service
Posting your patient or caregiver story on this website is a completely free service by the International Scleroderma Network (ISN). You can join the ISN today to receive our ISN Insider Newsletter as well as many other special features as they are introduced.
Story Guidelines
1. Be real (not preachy, nor overly happy-wappy, please.) Try to keep your story free of political or religious views, as people of every persuasion visit this web site.
2. Tell the truth about your journey with scleroderma (or related illness.) Tributes to caregivers, caregiver stories and memorials are very welcome. Stories of the still-undiagnosed are also welcome, as often it takes years before firm diagnoses can be made of many connective tissue diseases.
3. Proof it yourself: We will do spell-check on your story, minor grammar edits, and format it into paragraphs as needed. However, we will strive to leave your story largely untouched so that others hear your story, in your own words. And at any time, you can submit corrections, revisions or updates to your story.
4. About 1 page: Please take as much or as little space as is required for you to tell your story to your satisfaction. A general rule of thumb is up to about 1 letter-sized page in length, since so many people have rather limited attention spans. People may contribute two (or more) stories, if desired: such as one in the "Patient Stories" category, and another in the "Tributes to Caregivers" category.
Photo Submissions
Send your .GIF or .JPG images as an email attachment to isn@sclero.org. Be sure to include your full real name so we know for sure which story it goes to. (This must be your original photo, of course, and not the copyrighted property of anyone else.)
Story Submission Form
Fill out the Story Submission Form and when you are done, press "Submit."
Story Tip Sheet
Do you want to tell your story, but do not know how to start? See our Story Tip Sheet for ideas of topics to cover.
How To Make Changes or Updates to Your Story
Whenever you want to amend or update your story, simply fill out the Story Submission Form again but include only the Required fields plus the items which you want to have changed.
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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 Story Tip Sheet
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
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International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
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