I am knew to this board...My aunt has recently been diagosed with Scleroderma (creast) her doctor told her what she had...and told her to ask someone at home or someone that she knew with a computer to look it up for her to find out what it is...I didn't think this was the proper way to go about diagnosing a person with a disease as fatal as this one...What I have been reading on the net is not what I want to tell her...It says that this disease freezes your skin over a period of years and will evently kill you ...Is there a different kind of Scleroderma that I am not finding that isn't as fatal? If there is please tell me what it is called. And if anyone has or knows someone with scleroderma please tell me how it actually acts.
Thanks a bunch,
I have to disagree with the last posting. Scleroderma can be fatal in it's severe form, but it isn't always, and there are medications to control the symptoms. My uncle had scleroderma, and he lived for many years with the condition. He eventually died at the age of 74 from heart failure, which the schleroderma may or may not have contributed to. My uncle never knew he had a "fatal disease". To tell someone they have a fatal condition, and to give them no hope is cruel. There is always hope as long as someone is alive. Your aunt may live for many, many years, and may even live a full life.
[This message has been edited by 1Dove (edited 11-01-2002).]
Your aunt should get another doctor. One who can explain her condition to her, but explain it with compassion. And explain to her what treatment options are available. My uncle never had any treatment for his scleroderma, but he lived for over 20 years with it. His first symptoms were tiny little bumps, like pimples, that we first noticed on his ears. He got more and more little bumps, and in time his skin became tight. Eventually, he had a hard time using his hands, and chewing because the skin of his jaw and hands was so tight. But he was completely independent up to the time of his death. He drove down to see us just ten days before his death(a trip of 100 miles). He was never an invalid, and we are not even sure if his death was related to the scleroderma or not.
My sister has a form of scleroderma. She never knew what it was, it looks like a burn scar the size of a baseball on her shin. She knows now what it is because the first time she became pregnant, the doctor noticed it and tested her immediately for obvious reasons...Anyway, it is not the form that is fatal. She remembers having it as a child and thought nothing of it until the doctor tested her. What are your aunts symptoms?