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Loraine’s Story

When former intensive care nurse Loraine, her daughter Kristl, and her unborn grandson, Zen, were all diagnosed with myotonic dystrophy type 1 (DM1), Loraine was determined not to let any valuable time pass before taking action to help her family. Pushing her own emotions aside, Loraine leant on her nursing experience to develop a comprehensive care plan and advocate for her family.

I knew that DM1 could be a very aggressive condition, so after my daughter, grandson, and I were diagnosed, I let my instinct as nurse take over and created a care plan to follow. I skipped over the grieving process because I knew I had to act immediately.

Managing Kristl’s symptoms over the years has been a challenge for Loraine while also trying to deal with her own symptoms. For Kristl it can be difficult to complete daily tasks such as dressing herself or washing her hair, and she also experiences challenges from cognitive issues that can affect her executive functioning and memory. As a result, after giving birth to Zen, Loraine became his guardian and primary caregiver. Although Loraine has dedicated herself to Zen’s care, she also carries the burden of suffering from several manifestations of DM1 herself, such as gastrointestinal issues, muscle weakness, respiratory concerns, and daytime sleepiness.

As Loraine and her loved ones continue to navigate their experiences with DM1, she expresses the importance in finding a physician who will take the time to listen and learn about each individual’s own challenges with the disease. Support groups have also proven extremely valuable and Loraine has taken a leadership role in the Orange County, California Myotonic Dystrophy Foundation Support Group.

I would advise doctors to help connect their patients with a DM1 support group immediately. Physicians aren’t trained to support patients emotionally and don’t truly understand the impact the disease has on their patient’s physical and mental well-being, which is why support groups are a really helpful resource.