No one needs to tell someone with myositis that the disease brings with it a great many physical, mental, and financial challenges. The debilitating symptoms significantly affect one’s quality of life (QoL), yet the impact of these burdens has not been documented in the literature. Until now.
Recently, a team of researchers, led by TMA Medical Advisor Dr. Lisa Christopher-Stine, conducted a survey of TMA members to better understand the experiences of those living with dermatomyositis. The 60-question survey included 195 individuals and focused on the impact of the disease on participants’ physical and mental health, productivity, and treatment satisfaction.
The findings bring to light the substantial burden of DM on patients’ QoL and underscore the need for better financial support, mental health care, and improved treatment options.
I read the full report and was surprised that swallowing issues and loss of voice was not mentioned as some of the issues that are most bothersome. Those are two issues I feel rate with fatigue, muscle weakness, and muscle pain. Just thought I’d mention it.
I definitely feel qol, financial instability, physical and mental issues are very important issues for us with DM. Thanks for doing this survey and reporting for all of us to consider.
We agree!