Visit Sclero Forums, Chats and Blogs!
 
Search sclero.org:
 
The most important thing in the world to know about
scleroderma is sclero.org with 5,000+ pages in 23 languages!
 
Donate in MemoryIn loving memory of Tom Regensburger, and Vera Kortan . (Donate)
Home   Medical   News   *Sclero Forums*   Support   Languages/Countries
Earn $150 on July 30th in Boston Marketing Research Study if you have scleroderma or CTD and have been screened for pulmonary hypertension!
Frog jumping for joy by Shelley EnszPDF Flyer: Boston Marketing Research Study. Schlesinger Associates-Boston, a national marketing research company, is currently looking for patients who have been diagnosed with Scleroderma or other Connective Tissue Disease, who either have pulmonary hypertension or who are regularly screened for it, to participate in a July 30th paid marketing research study in Boston. Read PDF Flyer: Boston Marketing Research Study or call Katherine at 617-542-5500 x310. Schlesinger Associates-Boston. Posted 07/26/10.
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
Stories in Other Languages: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Michelle S: Daughter of Systemic Scleroderma Patient

I sat there and watched him tell my baby sister that he could not hold her right then because, "It hurts too much."

Angles Watchin' Over Me - for Michelle by Shelley Ensz I am eighteen years old and my father has systemic scleroderma. He has had this disease for about two years now. I'm not sure why my father has to suffer through so much pain, and I pray every day that he will be relieved from his pain?

I remember being so scared of losing my father. He is one of the greatest men in the world. He is more compassionate and wiser than anyone else I have ever come across. I lost my mother when I was two years old and I really was scared of losing my father, also.

I have a stepmother whom I love more than anything. She pretty much raised me. I also have two younger sisters, one seven and one thirteen, and two older brothers, one twenty-nine and one twenty-seven.

I remember one day, my youngest sister wanting to sit up on my dad's lap, and she was quite the chunk for her age. Anyway, my dad tried to lift her up and he could not. His joints hurt too badly. I sat there and watched him tell my baby sister that he could not hold her right then because, "It hurts too much." That broke my heart.

But this winter, it is not that bad. His skin is loosening up and he can go outside and do yard work and he can put my little sister on his lap. And this next summer, he will be able to walk me down the aisle when I get married. I have wanted that since I was a little girl, but even more so since he got sick.

I really believe that my father is healing. He gets stronger every day and can do more and more. I just wanted to let everyone know, that it may seem like a long time before you get well, but with enough prayer and hope, everything will be okay.

To Contact the Author
Michelle S.
New email address needed 01-18-05 SLE
Old Email Prefix: actor_chick
Story posted 1-8-02
Story edited V1 7-27-03

Story Artist: Shelley Ensz

Story Editor V1: Judith Devlin
LINKS
Caregiver Stories
Systemic Scleroderma
This Story is Featured in Voices of Scleroderma Volume 1
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue...
Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye...
Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse...
Heather A: Scleroderma (South Africa) My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen...
More New Stories: May-July 2010
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 Michelle T: Surviving Daughter of Systemic Sclerosis Patient
 
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.
  1. Post a message in Sclero Forums
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States

This website is certified by Health On the Net Foundation. Click to verify.
This site complies with the HONcode standard for trustworthy health information: verify here.

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.
Privacy Policy, Financial Disclosure, and Disclaimer.
© Copyright 1998-2010 International Scleroderma Network
All Rights Reserved
 
Home   Donate   Medical   News   *Sclero Forums*   Support   Translations   Search