Hear From Patients & Care Partners

Hear people living with DM and their care partners share their stories.

Join the Community

Featured Videos

Hear from patients and care partners as they share their journeys with dermatomyositis—from diagnosis to daily life—highlighting the importance of mental health, resilience, and hope, and honoring those we've lost.

Juan's story

Juan - Judi's care partner

Juan, Judi's care partner, reconnected with her in 2019, decades after high school, and now supports her through the daily realities of dermatomyositis. From helping with routine tasks like drying her hair and cooking meals to providing shade from the sun, Juan balances physical support with deep patience, recognizing the exhaustion Judi often tries to hide. His crucial message to fellow care partners: you must prioritize your own well-being and manage your stress, because taking care of yourself is the only way you can truly sustain your partner.

Advice to those newly diagnosed

Will - living with DM since 2020

Life hacks: slow down

Jennifer - living with DM since 2023

Feeling isolated with DM

Jim - living with DM since 2023

Diagnosis & Discovery

Explore stories of how patients first noticed symptoms, navigated misdiagnoses, and ultimately found answers through persistence and expert care.

From a gardening itch to a dermatomyositis diagnosis

Pam - living with DM since 2024

How a bad sunburn at a baseball game led to her dermatomyositis diagnosis

Sarah - living with DM since 2017

How an active lifestyle caused her to overlook the early signs of dermatomyositis

Gabby - living with DM since 2020

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.

The twelve spoon analogy

Pam - living with DM since 2024

Relearning daily activities with DM

Pam - living with DM since 2024

Life hacks: Pacing yourself & home modifications

Cassandra - living with DM since 2024

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.

Mental wellbeing with dermatomyositis

Judi - living with DM since 2011

Being resilient and getting back up

Makayla - living with DM since 2016

Advice to those newly diagnosed

Will - living with DM since 2020

How Dermatomyositis Affects the Body

Understand how DM affects different parts of the body and how symptoms evolve over time.

From drowsiness to rashes and purple eyelids

Judi - living with DM since 2011

The initial flare marked by skin involvement and girdle muscle weakness

Jane - living with DM since 1997

The itch, scarring and photosensitivity from DM

Makayla - living with DM since 2016

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.

Finding the right doctor through self-advocacy

Pam - living with DM since 2024

Advocating for support services for dermatomyositis

Cassandra - living with DM since 2024

Patient advocacy helps clinicians better recognize and manage DM

Jane - living with DM since 1997

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.

Pam's complete story

Pam - living with DM since 2024

Cassandra's complete story

Cassandra - living with DM since 2024

Sarah's complete story

Sarah - living with DM since 2017

Care Partners - Supporting Loved Ones with Dermatomyositis

Stories from care partners navigating daily life, treatment, and emotional support for those living with DM.

Juan's story

Juan - Judi's care partner

Ed's Story

Ed - Marilyn's care partner

Khaoula's Story

Khaoula - Austin's care partner

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

Julia - Nori's care partner

Who was Nori?

Julia - Nori's care partner

Nori's dermatomyositis journey

Julia - Nori's care partner

PeerConnect

As a member, you can reach out directly to people who have shared their story on the site in order to continue the conversation beyond the video. Start by clicking the ‘Connect with’ button under the person’s video.

Marilyn

Living with DM since 2007