My mother was just diagnosed with Scleroderma. How serious is it? How can I help her cope?
August 5, 2010 by admin
Filed under Scleroderma
She has a build up of collegen on her stomach. The doctor said it was not systemic, it is limited, but im still very worried about her.
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Tags: collegen, stomach
Maya A on Thu, 5th Aug 2010 7:58 pm
Scleroderma is an autoimmune disease. Autoimmune diseases are diseases in which the antibodies attack normal healthy cells rather than harmful viruses.
I don’t have scleroderma but I have sjogren’s syndrome, hashimoto’s and fibromyalgia (all autoimmune diseases). I can’t tell you much except for one thing that is true for all patients with autoimmune disorders: they absoultely need a lot of support and understanding.
This is mainly for 2 reasons: 1. Autoimmune disorders usually cause symptoms, not signs (meaning that what the patient is feeling can’t be detected by tests like BP, Heart rate…etc). Often this causes the people around patients to not understand the patients, since nothing can be detected externally or through tests. I always have pain and its not like its something easy for people to understand. It’s not like I have diabetes where I can just say "My sugar’s at 40". No, this is something only I feel and only I know.
2. There is no cure for autoimmune disorders. The person will just have to live with it. Any medications taken will be simply to relieve the symptoms but nothing to fix the actual problem.
A couple of things to keep in mind:
When it comes to autoimmune disorders (since they’re very rare, hard to diagnose, hard to know when there’s improvement or no improvement, and no cure), the patient knows more than the doctor. Autoimmune disorders are something you learn to live with. It’s a part of daily life. So the patient should learn to know what makes him/her feel better.
Support your mom as much as you can. If she says she’s not feeling well, believe her. Although she has the scleroderma in her stomach only it can spread and she can also have another autoimmune disorder (since they’re so connected), so if for any reason your mom wants to go to a second doctor or do any extra tests, encourage her to.
I hope this helps.