I was diagnosed with dermatomyositis in 2001, just a few months after I had my baby. My life has changed in a good and bad way. I am learning to live life to the fullest as if it was the last day of my life.
At first it was hard, but I have learned to accept this illness. I am twenty-eight years old with a four-year-old girl who gave me the will to live when I wanted to give up. I lost all my hair in just a few weeks. Then I gained a lot of weight. My face and the skin on my whole body looked like someone who had been buried for two weeks.
I just knew then that my child's father would leave me, but he stood by my side and later became my husband even when I thought I looked like a monster.
Life is very painful for me every day I wake up, but the Lord is on my side so I must have faith.
New email address needed 08-06-09 SLE
Old Email Prefix: denisejg
Story posted 02-11-05 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .
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: Cindy Dorio, Shelley Ensz, Margaret Hollywood, Michele Maxson, Joan-Marie Permison, Anonymous, Maryellen Ryan, John Roberts and Bradley Lawrence.
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.