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.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.