Road to Diagnosis: Acceptance and Mission
It took me five years to get a diagnosis, polymyositis, and different parts of my proximal muscles were getting weak every year. It started with...
#MyositisLIFE - Page 7 of 7 - Myositis Patient and Caregiver Experience
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Care Giver, A Poem
For Mavis, Love Stella. A Caregiver poem for a dear friend. I am the care giver you see me every where, but what you don’t...
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This is our life now
Inclusion Body Myositis does not change the way you love your parent. It should not change the way you look at your parent. I had...
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Sadly my mum lost her battle as an IBM warrior
Mums journey with inclusion body myositis was a very difficult one.Following her first fall mum noticed she was falling more and more often, she saw...
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An Open Letter: Dear Dermatomyositis
In January 2015 I was diagnosed with Dermatomyositis at the age of 36. Of course, I never heard of it. My initial reaction was mixed...
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Myositis Awareness Day And My Husband’s Diagnosis
I thank God for each day that I’m able to love and support him the way that he’s always loved and supported me. We still...
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A Few Words for the Moment Before Myositis
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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Trapped
I was diagnosed with dermatomyositis (DM) in early 2015 when I was 22 years old. I always considered myself very healthy up until I was...
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“Save Me” a song about #MyositisLIFE
"Save Me" by Alyssa Smith is a song about myositis, released on Rare Disease Day 2019.
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The Most Suckiest but Best things about my Mommy having Myositis
I feel peaceful because I usually behave well because I know how hard things are for my mommy. I am peaceful because I have learned...
