A touching personal story from the daugher of a myositis patient remembering that her Dad, her longtime hero, ...
This is a collection of personal, user submitted stories.
We learn from the experiences of others, so we want Myositis patients, caregivers, family members, and friends to share their stories of what life is like living with the rare disease, Myositis, and its subtypes.
What I find myself thinking about now, for the first time, in any detail, is who I was at...
Trapped
, , , Personal Stories, 0
A wife, sister, soldier, student, and a daughter. Life was great. 22 years old and nothing seemed impossible. The...
I truly have a passion and desire to prevent others from going through what I've gone through! I...
I'm about to share a bit about myself that may be scary or shocking. I am certainly exposing some...
Staying the course
, , , Myositis, Personal Stories, 1
Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course...
Sadly, my mum lost her battle as an IBM warrior
, , , Inclusion Body Myositis (IBM), Personal Stories, 1
Mums journey was a very difficult one. I remember her first fall the day I gave birth to...
Sorry if my grammar is not good. I’m not fluent in English. I’m Akira 23 years old and lives...
She Said, He Said - Part 1: Myositis muscle weakness. Part one of the series by Emily Filmore and...
"My daughter is my first priority, always. There are days when brushing my hair is hard, showering is a...
In sickness and in health My love affair with Dermatomyositis started on the 14th February 2004 aged 22. Maybe...
My Myositis Journey
, , , Personal Stories, 0
My name is Elizabeth and I am married to the love of my life and have a beautiful daughter....
There were several things about myself over the years that by age 39 seemed a given; I was small...
Lift Your Voice and Let Your Light Shine I was asked if I would be interested in sharing my...
Choices
, , , Personal Stories, 0
Choices by guest author, Pat My name is Pat, I am a 56 year old mother of two, grandmother...
5 Week Road trip to Yellowstone with IBM Adventurers by guest author Camille Lesoine Ray and I are back...
My new life,with Polymyositis by guest author, Sandra Hello my name is Sandra. I have a rare autoimmune disease...
Before Dermatomyositis I was a pretty healthy guy. I was in good shape, went to the gym 7 days...
Myositis Awareness Day And My Husband’s Diagnosis by Guest Author, Barbara Naturally Speaking It’s been almost three years since...
I wasn’t expecting to be dealing with an autoimmune disease, let alone at 27 years old, but these are...
Upcoming Events
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New Developments on the Role of Itch in Dermatomyositis by Dr. Victoria Werth
May 30 @ 2:00 pm - 2:45 pm EDT
Recent Articles
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PR: MSU, Portable Genomics teaming up to bring a tailored health data management platform to myositis patients May 16, 2018
Portable Genomics and Myositis Support and Understandin...
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Speaking engagement about myositis at Corbus Pharmaceuticals May 15, 2018
Corbus Pharmaceuticals will host Jerry Williams, the Fo...
