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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
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Story Submission or Revision Form
For English or Other Languages
Please use this form for stories in English, or for any languages that do not have their own submission form yet.
(Dutch) Hoe plaats je je verhaal?
(German) Vorlage der Krankengeschichte bzw. Durchsichtsformular
(Italian) Scheda di  Presentazione o Revisione della Tua Storia Personale		 (Polish) Formularz przedstawienia historii lub wniesienia poprawek
Russian Story Submission Form
(Spanish) Presentación de Relato ó Forma de Revisión
(Turkish) Hikaye sunusu veya Yenileme Formu
To avoid possible data loss, we suggest that you type and save your story in another program and then copy it into the story form below. To protect children's privacy, we only accept stories submitted by people who are over 14 years of age.
Required Security Question (to discourage spammers.)
Please select the button next to the number ten:
Your Full, Real Name:
This is required so that your copyright release is valid. This information will not be released to any third party. See our Privacy Policy.

Your Name or Nickname on Story Page (Check one)

I will use just my first name, or a nickname, and a last initial.
I want to use my full real name, or my maiden or former name, and I release the International Scleroderma Network from all liability for this. I understand that using my full name is always risky on the Internet, and that information I reveal may be used against me by former spouses or friends; identity thieves; disability reviewers; life, health or disability insurance companies; media representatives, or by current or future employers.

Your Name or Nickname on Story Page:

Your Email Address:
This is required in order for us to be able to contact you regarding your story submission.
Email Release: Is it okay to post your email address (above) with your story? This might produce unsolicited or unwanted mail. However, it may also let people express how much your story meant to them. Check one:

Yes , it's okay to post my email address (above) with my story
No , please do not put my email address on story page.

Copyright Release for Web Site Do you give the International Scleroderma Network the exclusive right to post your story on this website, indefinitely, with the understanding that you may submit changes to your story, or request its removal, at any time?

This means that other websites may freely link to your story, but nobody would have the right to reprint this particular story without the prior express written permission of both of us. This is to make sure that our site visitors will be reading original stories here, rather than "repeats" of stories from other websites.

This release refers only to this particular version of your story, which means that you remain entirely free to post other, different versions of your story anywhere you choose. Check one:

Yes , you have my Copyright Release for web site use.
No (Please stop here, or email our Story Editors with your questions about this.)

OPTIONAL: Copyright Release for All Printed Materials

We have closed submissions for our Voices of Scleroderma book series (Volumes 1, 2 and 3.) However we may want to publish your story some day. Do you give the International Scleroderma Network the right to post your edited story in any print publication, such as books, magazines, newsletters or brochures?

You do not have to agree to this in order to have your story posted on our website. Please feel free to email Judith Devlin if you have questions about this release. Check one:

Yes , you have my permission to print my story in any print publication, such as books, magazines, newsletters or brochures, in order to help raise awareness of scleroderma or related symptoms or illnesses.

No. Please do not publish my story in print publications.

Your Full, Real Name:
Street Address/apt. # :
City/State/Zip:
Country:

For Patients: What is your diagnosis? This will be used for labeling and categorizing the stories, and will appear on your story page. Examples: Diffuse Scleroderma, Limited, Morphea, Linear, CREST, CTD, UCTD, MCTD, Overlap, Diffuse with CREST, Raynaud's, undiagnosed, Pulmonary Fibrosis, Lupus plus possible Scleroderma.

In your story, you can include all your diagnoses if you want. Just list the "main" thing(s) in this box. Remember, you may submit changes at any time, should your diagnosis change.

The primary purpose of our stories is to render emotional support and comfort with others who may find comfort in seeing how we have coped, and not to give specific reference to our medications or treatments, which can be found on our medical pages. If you advocate one particular still-unproven remedy, the best place to post your story is on a website that singularly promotes that remedy, or to just refer to it as "medication" and not by type or brand name.

We also avoid spiritual or political references since we serve a diverse, worldwide community. Using generic terms such as "My faith sustains me," or "I am very involved in politics," helps us convey the importance of our beliefs in this unique international forum, without raising anyone's ire. This helps us focus on what we have most in common, which is how we are coping with scleroderma or related illnesses. You can also just write what you want, and let our editors figure out the best way to convey your general intent.

For Caregivers/Friends/Survivors : Enter a description such as "Spouse of a Diffuse Scleroderma Patient", "Caregiver for Morphea Patient", "Mother of Linear Scleroderma Patient", "Widower of Scleroderma Patient," or "Surviving Friend of MCTD Patient."

Diagnosis or Relationship


Photos of You or Your Symptoms
 We would love to include your photo. Please email it as an attachment to stories@sclero.org. We prefer JPG files that are 10KB or less.
Your Story
New Personal Stories
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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