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greypilgrim256

Are there any younger sclero patients here? (30s?)

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Thank you all for the welcome. I definitely want an answer about my diagnosis before I go forward. The thought of amputation was more to keep me from losing more years to pain, more than any immediate concerns. I spoke to a leader of the support group I recently joined and she is going to help me get an appointment with a doctor who knows the disease, even if he is not classified an expert. She will also help me know what to ask. I am really glad I found this site because I was ignorant to just how ignorant I was. I look forward to learning more, meeting people, and sharing my journey here.

 

Trinity

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Hi Trinity,

 

I'm glad you've found us and that you now know how much it is you don't know. This is one disease where self-education is absolutely vital to know even what questions to ask your doctor.

 

Sometimes they just need to mention that amputation is a potential "treatment" on the horizon. They are especially likely to bring up that topic if you are doing anything at all that could be making your illness worse, such as smoking, alcohol use, caffeine, street drugs, not avoiding cold and keeping warm at all times, not properly managing blood sugar, high stress, medications with vasoconstricting side effects, or not following all of their instructions.  I've known people who have had several amputations before making necessary lifestyle changes, and then again, some never do.

 

If by any chance you are not following *all* of your doctors instructions to the absolute max, then amputation might be a very high likelihood, especially when combined with any type of scleroderma. Our rule of thumb is that whenever any of us are inclined to be noncompliant or self-destructive, it is a good idea for us to start (or continue) counseling to learn tools and techniques for enabling self-love and establishing and reinforcing new and better habits.

 

Most unfortunately, with some illnesses, including scleroderma, it is possible to do absolutely everything right, and still suffer amputations. Sometimes people get discouraged by that idea, and take it as meaning they shouldn't even try. But of course, surrounding yourself with great support and encouragement to be as healthy as possible under the circumstances, and getting the best medical advice possible, can make a world of difference and at the very least keep unavoidable damage to a minimum.

 

Please continue to find the specialists that you need to help address your health concerns, and the support you need along the way.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Trinity

 

What's the phrase, knowledge is power? Or how about, know your enemy? Take your pick!

 

It does help to know your disease and boy is it a confusing one! It took me ages to get the gist of the different types blah, blah, blah and then the symptoms, a never ending list of potential disasters, which would I have, which would I dodge and so on. I found asking questions and reading this forum, as well as the site itself, a user friendly way of picking up information.  

 

Please post your questions as they arise, enjoy the site and we look forward to getting to know you better.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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