Patients share their experiences living with dermatomyositis, one of a group of rare autoimmune diseases, the idiopathic inflammatory myopathies.
I don’t want dermatomyositis to define me or take over my life, but sometimes I’m vulnerable and not the strongest version of myself.
I am not a vampire. However, at the direction of my dermatologist, I am living a “full vampiric life.”
Myositis Awareness Month got me thinking…and really, reflecting about a time before my initial flare-up almost three years ago, when Myositis wasn’t at the forefront of...
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Clinically Amyopathic Dermatomyositis
Inclusion Body Myositis
Necrotizing Autoimmune Myopathy
Other (not listed)
My husband honors his vow; in sickness and health. But for me, when will I no longer grieve the person I once was? The girl...
I don't let this disease define me. I respect it. I acknowledge it. I am actually proud at times knowing it tried to break me,...
What I learned in those years is that this disease is not just pain, weakness, and fatigue, this is about mental toughness.
Stand Strong Together, Myositis Warriors!
These are the stairs from the condo that my family and I stayed last week for a vacation at the beach. "To be able to...
Anyone dealing with a chronic health condition (whether as a patient or loved one/care partner) can tell you, illness makes you think about things that...
Lisa Sniderman shares the story of her realization that we actually are grieving because of our chronic, rare illness and realized she hadn't grieved her...
In the process of dealing with Dermatomyositis, there are flares, painful aches, and weakness. I try to own it. Boss it. Then my body says,...
This image represents my determination, stubbornness, and desperation for something normal and happy in my #MyositisLife.
How can I raise awareness if I'm not honest and real about all that comes with dermatomyositis?