I am thirty-one years old and I live in Brazil. I decided to submit my story with the hope of getting more information about scleroderma. I have lupus and my mom has scleroderma. She is sixty-two years old and does not know that I am trying to understand her illness better.
I decided to do so because, although she pretends to be okay when she is near her children and grandchildren, my dad tells me all the time how sad she has been.
I do not know much about her symptoms because she hides them from me, but I can see how bad and ugly her skin is, especially her leg. One of her legs is much thinner than the other and she does not have strength in her legs, arms or hands anymore. She does not go swimming or wear Bermuda shorts because she is ashamed of her body.
I understand her in many ways, but I feel worried and sorry for her. Once dad told me she cried all night long because she had the impression the illness was getting to her internal organs.
I know how serious scleroderma is, but my question is: Will mom die soon? Will scleroderma get worse despite her treatment? Is there anything I can do to help her get better?
I have lupus, so I know how it feels to have a chronic illness. I think I understand her, but she is my mom and I do not want her to suffer like I do. I am afraid that scleroderma might be worse than lupus.
My mum has been getting worse although she tries to pretend she is better every time I call her and ask how she has been feeling. I usually call her three or four times a day to see how she is.
She has a lot of joint, muscle, and bone pain. It makes me feel miserable to see my dad carry her to the bathroom so she can brush her teeth. She has nausea all the time and I am not sure exactly what might be causing that. She has been going through many exams but we have not heard much from her doctor yet.
I hope I can help her somehow!
Email: [email protected]
Story posted 4-20-02
Vol. 2 matching edits 01-04-05 SLE
Story Artist: Ione Bridgeman
This story is featured in the book Voices of Scleroderma Volume 2
PDF Brochure: What is Scleroderma?
What is Scleroderma?
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: 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.