Links and Information
I was completely overwhelmed when I was diagnosed with an autoimmune disease. Although I have myositis, there are more than 100 types of immune system and related disorders. Many of them have common symptoms and similar treatments. It’s not uncommon for autoimmune conditions to overlap. I’m sharing helpful links to resources for autoimmune disease and myositis (as well as chronic disease in general) that I’ve found to be helpful.
Did you know that autoimmune disease affects more than 23 million Americans? The NIH – National Library of Medicine is a good starting point for learning the basics – and diving deeper when you’re ready.
Chronic Illness, Physical and Mental Health:
The Mighty is a digital health community. Its goal is to connect and empower people living with health challenges and disabilities. The content is much broader than autoimmune disease. With more than 2 million registered users, you’re bound to find others with the same condition that you have.
The Myositis Association has been instrumental in helping me understand the different types of myositis, treatment, disease management and current research.
Need support? There are Facebook Groups for that!
Myositis Support Group (Dermatomyosits, Polymyositis, etc.) offers a wealth of information and is especially for the newly-diagnosed and their families. This is a closed group, which means that it’s a private forum and you will need to request admittance to join.
Living Well with Dermatomyositis, Polymyositis, etc. is another closed support group. It’s a terrific option for people who are finding their “new normal” and whose disease is either in remission or is well managed.
There are many other resources for autoimmune disease and myositis This will give you a starting point. I’d love to hear about other sources of information and support that you’ve discovered in your journey with chronic illness, autoimmune disease or myositis specifically.
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