May I please be provided with a defin... - Scleroderma & Ray...
May I please be provided with a definition of Scleroderma?
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I quote from the RSA "Hot News" by Professor Chris Denton:
"Scleroderma is the medical term for "hard skin" but is often used as shorthand for sustemic sclerosis, a condition which is characterised by thickening or hardening of the skin that varies in extent, and also by abnormal circulations (e.g. Raynaud's phenomenom). In some cases by damage to internal organs such as in the heart, lungs, kidneys or bowel."
An autoimmune condition whereby the body attacks itself producing excessive collagen. There are 2 types limited and diffuse. I have the full blown systemic type (Ive never been known to do things by halves!) so I have annual heart and lung tests to assess any damage to the internal organs. However Prof Denton is THE daddy of Scleroderma andso I would go by his definition more than mine ! I can not express how much gratitude and respect I have for Prof Denton, Dame Prof Black and their team - I have known them a long time !
I agree with all of the above, Systemic Sclerderma effects the iternal organs, but you may have skin connections in the beginning. No two people have ever had the same symptoms, reactions or progression as others. No two people are alike. But the body is attacking itself, it doesn't recognize the connective tissue as part of your body, it sees it as a forgein object and tries to destroy it. This is what happened to me and now my hands, wrists, elbows,shoulders, knees, ankles and feet are all contracted to a point. I type with two contracted thumbs, my fingers are unusable. My feet are the same. When I first contracted this disease, I couldn't lay down. It's been a long hard 14 years. 4 surgeries, two internal organs and no lung involvement yet, so I concider myself blessed!
all of the above, and more! I like Marcy's answer. I have been diagnosed for 10 years, and have heart and lung involvement. I view it as simply part of my life's journey. This illness has been a "blessing", in that I truly have learned to appreciate all the gifts in my life. We all have them. I wouldn't want to give anyone this illness, but I appreciate every day I have.
Suffice it to say that I am in awe of you and Marcy and anyone that has contracted this illness, full disclosure; I am simply an observer of what my own Brother had to go through for 14 years. He was a warrior who struggled to the end with both Systemic Scleroderma and Raynaud's Phenomenom. Thanks to all of you for your answers.
Arturo, bless you! The most difficult part of this illness is for others to watch us change. It is very difficult for my husband to see me on my "bad" days. There is nothing he can do, and I understand his frustration. I have accepted that I can't do all that I used to, but I still feel very fortunate to be here. Your brother had to have been a very special person!
Thank you Dawn. But for this insidious disease, he would have contributed an enormous amount to our lives. I am comforted in the fact that he doesn't have to struggle anymore, and will forever miss him. Nothing else but the very best to you in your journey.