TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

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
Toni: Spouse of Stem Cell Transplant Survivor
Jeff is now seventeen months past his stem cell transplant
and to look at him you would never know he was sick.

Beach Hangglider by Sherrill Knaggs, ISN Artist On November 1, 1999, my husband, Jeff, was diagnosed with scleroderma and our life changed, as we knew it. We had a seven-month-old son and had been married just over two years. Jeff was just twenty-three years old and had been seeing doctors for over a year trying to find out why he was having symptoms such as his hands and feet turning a blackish color in cold temperatures as well as having terrible pain throughout his body every day.

When his family doctor sent him to University of Michigan for further diagnosis, that is where our journey with scleroderma began. We were told that Jeff had a very fast progression of the disease. The skin on his arms, legs, chest and back were already tightening. He also was affected in his stomach and throat, which gave him acid reflux problems, and showed signs of damage to his lungs (though minimal). Jeff lost approximately forty pounds in a matter of a few months and could not even drink a sip of water without pain in his chest.

On the day Jeff was diagnosed, he was told to go home and quit his job as a cabinet builder and finisher, and that he had approximately five years before the disease could possibly kill him. As you can imagine, this felt like someone just hit our family with a truck. How could this happen to us? Well, we met the people that I say saved my husband's life. The doctors at the University of Michigan worked very hard to present us with all of the options, and Jeff was offered a chance to participate in the stem cell transplant research program. After reviewing all our choices, we realized that this was our only option to have a chance at spending our life together as we had planned.

On March 3, 2000, after many tests and a lot of hospital visits, Jeff was administered the stem cells that were going to change our lives. I am happy to say that Jeff is now seventeen months past his transplant and to look at him, you would never know he was sick. He is working full time and living his life as he had always planned. We are very grateful that we were given the opportunity to take part in the stem cell research and that it was successful.

Now my two year old can play with his dad and enjoy it! I would recommend that anyone who thinks that they may have this disease, seek out a rheumatologist and have the tests done. There is hope and the more people who know about it, the better.

To Contact the Author
Toni
New email address needed 8-14-03 SLE
Old Email Prefix: tonis
Posted 8-1-01
Story edited 7-16-03 SLE
Story edited 7-25-03 JTD/V1

ISN Senior Artist: Sherrill Knaggs
LINKS
Acid Reflux
Caregiver Stories
lung involvement
Raynaud's
Stem Cell Transplant Research
Skin Involvement
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
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!
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 Toni H: Morphea Scleroderma
 
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
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.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved