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Dermatomyositis: An uncommon skin and muscle disease

From the Wisconsin Northwoods, a battle against dermatomyositis: discovering resilience and resources in the journey of a rare disease.

Up until the spring of 2021, Toni Thompson lived an active lifestyle. She enjoyed physical activity, playing catch with her son, and going on frequent adventures near her home in Eagle River, Wisconsin. 

Patient with dermatomyositis shares diagnosis journey
Toni Thompson – Dermatomyositis patient

But that fateful spring and summer, a series of new symptoms began to affect her energy levels. Toni began experiencing muscle weakness in her arms. It was a fatigue she wasn’t accustomed to, but it didn’t seem serious at first. 

Then, she noticed a strange rash on her forehead and across her eyebrows. It was faint at first, and she didn’t think much about it. 

But in subsequent weeks, her condition only worsened. Soon, her core muscles and legs were frequently tired, and she simply didn’t have the energy she used to. She felt exhausted after completing simple chores and had to rest frequently to make it through the day.  

In time, even the act of chewing and swallowing her food became difficult, and her primary care provider became concerned that Toni would weaken to the point of being unable to breathe properly. 

What came next was a long road for Toni – trying to find a diagnosis for this mysterious illness.  

Watch her amazing story of resilience on the path to her dermatomyositis diagnosis at Marshfield Clinic Health System, including all the support she received along the way. 

For help with rare diseases, talk to a Marshfield Clinic Health System provider.

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