Hear From Patients & Care Partners
Hear people living with DM and their care partners share their stories.
Featured Videos
Karen’s complete story
Advice for care partners
Life hacks: slow down
Feeling isolated with DM
Diagnosis & Discovery
Explore stories of how patients first noticed symptoms, navigated misdiagnoses, and ultimately found answers through persistence and expert care.
When yoga got hard: my DM diagnosis
Misdiagnosed for months: the dermatologist who finally saw the signs
The initial signs of MDA5 dermatomyositis
Living with Dermatomyositis
Hear how individuals manage everyday life with DM—from career changes and new hobbies to home care and navigating the healthcare system. These stories reveal practical life hacks, emotional resilience, and the creative ways people adapt routines to live fully with DM.
Using supplemental oxygen
Life hacks: slow down
Life hacks: the need to plan ahead
Mental Health & Resilience
Hear raw, heartfelt stories from patients and care partners about the emotional impact of dermatomyositis. Their voices reveal how therapy, creative expression and inner strength help people navigate living with DM.
Importance of therapy
Career effects
Coping with the diagnosis
How Dermatomyositis Affects the Body
Understand how DM affects different parts of the body and how symptoms evolve over time.
Pain in feet and hands
Muscle and skin manifestations
The healing process
Advocating for Yourself & Others
Hear how patients and care partners speak up in medical settings, push for accurate diagnoses, and become powerful advocates in the DM community. These stories also highlight the importance of developing partnerships and support networks with physicians, family and friends.
Educating the medical community
Finding and giving support
Building a care team
Complete Patient Stories
Hear extended interviews from people living with dermatomyositis as they walk through their entire story. These detailed accounts reveal the impact of DM on their lives and their resilience battling this disease.
Karen’s complete story
Jill's complete story
Jim's complete story
Care Partners - Supporting Loved Ones with Dermatomyositis
Stories from care partners navigating daily life, treatment, and emotional support for those living with DM.
Philip’s Story
Chris’s Story
Kia’s Story
Care Partners - Honoring Loved Ones Lost to Dermatomyositis
Powerful reflections from care partners who continue to advocate, educate, and share their journey after loss.
Nori's full story
Who was Nori?
Nori's dermatomyositis journey
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