I think one of the hardest things about all this is that my children may never really know my mom like I do. My mother has scleroderma, lupus,and Raynaud's and I think it is also call CREST. I came to this web site because I do not know a lot about my mom's illness and I am trying to learn more about it. But so far I have not heard any stories that are like my mom's.
She is forty-seven and has been ill for as long as I can remember. She has gotten a lot worse in the last seven years or so. She has had all but four fingers amputated, all of her toes on her left foot and her right leg up to her knee has been amputated.
Every time she has surgery she does not heal well and she gets an infection and normally has to go back to the hospital to get it redone or get the doctors to do some more work on it.
I remember when I was younger, her fingers would get really cold and she would have to keep heating pads on them. Eventually they turned into sores and then she would have to get them amputated—one finger after another, then her toes. Her right leg was amputated because she had a blockage in it and it was not getting circulation.
I can't help but think will it ever stop?
She has good days and bad days but for the most part every time I am around her she has a very positive attitude, but I know she is in a lot of pain.
It is very hard because she was able to take care of me when I was young but there is nothing I can do to help her. I would love to hear from someone that has a similar story to this. I am trying to learn as much as I can so that I can understand it more. But nothing I read is like my mom's condition.
New email address needed 08-06-09 SLE
Old Email Prefix: Jsclsmith
Story edited 11-05-05 JTD
Story posted 11-11-05 SLE
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.