Dermatomyositis.com

Dermatomyositis.com Your go-to source for stories and expert insights on dermatomyositis.

From diagnosis to daily life, learn what to expect and how others manage this rare condition.

06/20/2026

Ed has been Marilyn's care partner through her dermatomyositis journey since 2007, and over the years he's developed a mindset that carries them both through the hard moments.

When you're living with or caring for someone with a rare disease, the hurdles can feel overwhelming. Ed's approach is to stop looking at the hurdle and start looking at the goal. Break it down. Find the small wins. Connect them. And let those little goals add up to something bigger.

It's the kind of perspective this community needs. Find Ed and Marilyn's full story at dermatomyositis.com?a=fb_c.

06/19/2026

Mary has been living with dermatomyositis since 1975, and after nearly five decades she knows exactly how to describe what this disease feels like.

The pain isn't sharp. It's deep. It lives in her hands, in her large muscle groups, throughout her body. And it doesn't go away. It's the kind of pain that weighs on you day after day, in ways that are hard to put into words but instantly recognizable to anyone in this community.

Her story and so many others like it are waiting at dermatomyositis.com?a=fb_c.

06/18/2026

Makayla has been living with dermatomyositis since 2016, and she's thought a lot about what got her through.

The resiliency she found didn't just come from inside her. A lot of it came from her mom, who simply refused to let her give up. And with a disease like this, that kind of presence can change everything.

Her story is one this community will deeply understand. Find it at dermatomyositis.com?a=fb_c.

06/16/2026

Sarah has been living with dermatomyositis since 2017, and she's honest about how dark it can get.

The days when you can't see a way through. When you don't know if you'll ever feel normal again. Those days are real, and so many people in this community have lived them quietly.

But Sarah also knows what happened on those hardest days. People showed up. And that made all the difference.

Her story and so many others like it are waiting at dermatomyositis.com?a=fb_c.

Join Dr. Prateek Gandiga, a leading expert in dermatomyositis, for a discussion on patient experiences in the VALOR tria...
06/13/2026

Join Dr. Prateek Gandiga, a leading expert in dermatomyositis, for a discussion on patient experiences in the VALOR trial, the largest study ever conducted for adults with dermatomyositis.

Explore what patients reported with an investigational once-daily oral medication about their symptoms, daily activities, quality of life, and overall well-being. Understand what these findings may mean for patients with dermatomyositis and why patient-focused research is so important to advancing care for this condition.

🗓️ Dermatomyositis Therapy: Exploring Insights from the Phase 3 VALOR Trial
June 17 | 6:00 PM EDT | Virtual Event

Register here: https://us02web.zoom.us/webinar/register/WN_SxoDBVUQRO2T9-qc9kZ1Zg #/registration

06/12/2026

Juan is Judi's care partner, and his advice to others in that role comes from a real and honest place.

When someone you love is living with dermatomyositis, the hard moments, the anger, the exhaustion, it can be easy to take personally. Juan's reminder is simple but important. That's not the whole story. It's the disease. It's all the other factors that come with it. And keeping that perspective is what makes it possible to keep showing up.

Find Juan and Judi's full story at dermatomyositis.com?a=fb_c.

06/11/2026

A few weeks after Emily was diagnosed with dermatomyositis in 2020, she finally had her breakdown.

The guilt of feeling like she should have put the pieces together sooner. Like somehow she had missed something she should have caught. Her husband talked her through it, reminding her that this disease doesn't show up all at once. It creeps. It hides in plain sight. And you can only connect the dots once you have them all.

If that resonates with you, Emily's story and so many others like it are waiting at dermatomyositis.com?a=fb_c.

06/10/2026

Juan is Judi's care partner, and he pays attention.

He sees the fatigue. He sees the exhaustion and the weakness, even on the days she doesn't say a word about it. And so he does what he can. Flipping tortillas when she needs a hand. Learning how to blow dry her hair because she taught him how.

It's the kind of caregiving that doesn't always get talked about but means everything to the person on the receiving end. Find Juan and Judi's full story at dermatomyositis.com?a=fb_c.

06/05/2026

Years of reading textbooks and medical training are valuable. But they don't replace what Sarah knows about her own body.

She's been living with dermatomyositis since 2017, and her message to the doctors who care for this community is simple. Trust your patients. Listen when they speak. Because the person living inside that body every single day has something important to say.

Her story is one this community knows deeply. Watch it at dermatomyositis.com?a=fb_c.

06/05/2026

Pam has been living with dermatomyositis since 2024, and she learned something important early on in her journey.

She wasn't going to take no for an answer. And if she wasn't getting the answers or the care she needed, she was going to find someone who could give them to her.

It's advice that every person navigating dermatomyositis deserves to hear. Find Pam's full story and others like it at dermatomyositis.com?a=fb_c.

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