During the 2024 Global Conference on Myositis (GCOM) that took place in Pittsburgh in March, a group of global myositis patient organizations, led by TMA, wanted to be sure the patient’s voice was heard throughout the scientific sessions. This video was included in the presentation by Dr. Kendrea Garand from the University of Pittsburgh to the nearly 400 attendees at this scientific conference. In it, TMA member and support group leader Rhonda Rogers, discussed what she experiences as a person who lives with inclusion body myositis (IBM) and dysphagia (difficulty swallowing). She also shared the wisdom of members of her support group who also experience dysphagia.
We are grateful for Rhonda’s persistent support and exuberant approach to raising awareness for the myositis cause.
The dysphagia I experience is quite severe. In the last year I have lost 40 pounds because of the difficulty swallowing. (147 lbs. down to 107 lbs.) I have gotten to the point where eating is just a chore. I don’t enjoy food anymore. I also have
Sjogren’s and the lack of saliva adds to the swallowing issues. I spend so much time feeling really angry about all of this and I wish I could come to terms with it. It’s derailed my life. I live in a small town and don’t know anyone else who struggles with these autoimmune diseases.