Treat my symptoms, please…but don’t patronize me
Our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also...
Our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also...
We explain and highlight a personal account of how one patient fought the insurance company trying to deny a medication for myositis.
New symptoms are not only an indication of a myositis “flare”, sometimes new symptoms mean an emergence of overlap of other conditions.
I realized that healing includes body, soul and mind.
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,...
Although my siblings tell me everything is fine, I know it's not. I'm with my mother every day... there's no way to make it look...
I live my life on my terms - finding joy in the everyday things, surrounding myself with people who love and support me and feeding...
I have polymyositis and was been diagnosed 28 years ago. Despite ups and downs in my treatments, my motto "Hope, Courage, Strength" keeps me going...
I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the...
My mystery disease actually shows up as a result of the loves of my life. A mystery that is so worth each 9 months. No...
I’m overwhelmed. I’m scared. I’m tired. I’m tired of new symptoms, new scares, new tests. But I am not alone!
I put it in the back of my drawer...thinking that would lessen the sting of seeing it and being reminded of all I’ve lost...
I have Inclusion Body Myositis (IBM); a rare and degenerative muscle wasting disease. It is an autoimmune disease with my symptoms starting when I was...
This was more like “A Month in the Life” since I filmed almost every day this month for Myositis Awareness. I am extremely fortunate to...
At 63, I thought the weakness was age-related until a vacation in Europe, where it became increasingly difficult to rise from a seat and climb...