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.
New email address needed 8-14-03 SLE
Old Email Prefix: tonis
Story edited 7-16-03 SLE
Story edited 7-25-03 JTD/V1
ISN Senior Artist: Sherrill Knaggs
Stem Cell Transplant Research
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!
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: