3/7/24

Leslie | Living with Myotonic Dystrophy DM1

“I’ve learned over the years—a lot of what I do to manage my health works. There’s no way I’m going to stop the progression, but I’ve proven to myself that I can mitigate some of the symptoms through diet, exercise, and attitude.”

Leslie Krongold has seen her life transform in ways she could’ve never imagined. As a young documentary filmmaker, she built a career that she imagined would sustain her into her autumn years. However, in her 30s she started to experience difficulty releasing her grip, and upon further investigation learned that she lived with myotonic dystrophy DM1, the same disease that affected her mother, who died in her mid 50s.
As her symptoms progressed, Leslie decided to leave her full-time job and freelance. Meanwhile, she began attending support groups for others with chronic diseases. Leslie soon found herself taking on facilitating roles in these support groups an she went back to school to fine-tune her patient advocacy skills. When the Myotonic Dystrophy Foundation (MDF) formed in 2012, Leslie took on the role of Outreach Coordinator and formed a profound understanding of all the burdens that come with DM1.
Now in her 60s, Leslie has seen much progress in the field of understanding and treating myotonic dystrophy. Her strategies for managing her health have been highly successful and sharing these tips along with others from the chronic disease community has become her life’s work. To expand her reach, she started a podcast, https://glasshalffull.online/Glass Half Full, in 2016, and it continues to be a vital source of information from and for people living with chronic disease and their caregivers.

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