Then I noticed a 'dinting' affect on Em's shins. After our pediatrician saw her, he sent us to our major hospital which is six hours from our home. All we were told was that Em had linear scleroderma. From there we read everything we could. This was not good. As far as we knew she only had a short time to live.
Well, here we are and Emma is now thirteen years old. She has gone through a lot, but not once in all that time has she ever asked "why me." Emma is the most courageous person I know. She did not have a normal childhood as she was always with doctors and nurses. They even call her 'the forty-year-old midget.'
Recently the specialist told us that her disease is burnt out, as Em has had no more new sites. So now we are going to fix what the disease has damaged. We are looking at skin grafts, collagen injections and whatever else is needed. Emma is not taking any medication at all now. Apart from the occasional emotional fit, she is doing great.
I now am beginning to research this disease. I did not think many people had scleroderma, but I now am finding and talking to lots of people with the same thing. It is so good to have support and be able to ask questions and have them answered. Now I can explain to Emma what is going on.
All in all, I think I have the most incredible daughter and hope that other people respect and support their loved ones with this disease. I would be more than happy if other sufferers of this disease could get in touch with me as I have many more questions.
|Debra R. - Emma's Mum
Email: [email protected]
Story submitted 6-05-03
Story posted 6-14-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
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: