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
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.