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| Patient & Caregiver Stories Main Menu |
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| How to Submit Your Story | | | | 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. | |
| 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... |
| Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten
much worse and has spread... |
| Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me... |
| 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 Story Tip Sheet |
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