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Karin’s Story

When Karin noticed herself tripping frequently, her doctor sent her to a neurologist who diagnosed her with myotonic dystrophy type 1 (DM1) through genetic testing. This was challenging news for Karin to acknowledge and accept, and, at the time, she didn’t know where to turn for answers or what her diagnosis meant for her family — which still weighs heavily on her mind.

I worry the most about my children because I don’t want DM1 to affect their lives, as it has mine. We discuss the importance of genetic testing, but ultimately it is their decision to be tested for DM1 as young adults and I hope they will choose to do so soon.

Over the years, her disease has significantly worsened, and today, Karin is frustrated by her lack of independence. She frequently needs help with once-simple tasks and has had to modify her daily routine to accommodate for her progressive muscle weakness and low energy levels. Karin also suffers from frequent stomach distress, overwhelming fatigue, arrhythmia, and balance and mobility issues.

I’m getting a lot weaker—I can barely lift anything because my arms are so weak, and my balance continues to decline. I constantly worry about falling and injuring myself. I have to rely on my family’s help a lot more often than I used to.

Her family has been an important source of support over the years, helping her navigate her various doctor’s appointments and accompanying her to support group meetings. Karin is thankful that she has a great multidisciplinary medical team surrounding her and has found much enjoyment from the community she’s gained from her Myotonic Dystrophy Foundation support group.

I really enjoy going to my support group. I think it’s hard for many people to understand DM1 because of the spectrum of symptoms that people affected experience, so it’s helpful to be with people who really understand, empathize and can provide support and knowledge.

Karin has been motivated by her family to maintain a positive outlook and live the best life she possibly can. She’s hopeful for the future, including one day having DM1 treatments for herself, her family and the entire DM1 community.

I don’t want to focus on the negative or unknown that comes along with my diagnosis—it’s not worth it. As long as I’m here, I want to live the best life possible.