Jennifer Broyden planned her own funeral at 22 after mistaking a rare autoimmune disease for common eczema while her body began destroying itself, the Irish Sun reported.
The 25-year-old from Virginia initially noticed a rash on her hand in August 2021, which doctors treated with a standard cream. The condition quickly escalated as she lost mobility in her limbs, struggled to walk up stairs, and developed severe skin fragility where light pressure caused wounds to tear open repeatedly.
“I had a PowerPoint called 'I'm Dead, Now What?' I had the urn that I wanted to be in. I had my last wishes, and I wrote letters to everyone,” Jennifer said.
Medical experts note that dermatomyositis is an incurable condition affecting roughly nine or 10 out of 1 million people. The immune system attacks healthy tissue, triggering severe muscle weakness, painful rashes worsened by sunlight, and internal complications.
“Every time I thought it couldn’t get worse, it would. My mobility became so limited that I was unable to roll over, feed myself, use my neck, or move any of my limbs independently,” Jennifer told the Irish Sun.
Dermatomyositis targets striated muscles and dermal layers, leading to progressive proximal muscle weakness and characteristic cutaneous manifestations like Gottron’s papules and heliotrope rashes. The exact etiology remains idiopathic, meaning medical science has not yet identified a definitive trigger for the autoimmune response.
As her condition deteriorated, Jennifer developed severe lymphoedema and fluid retention, leaving her bedbound in a rehabilitation center. The continuous pressure of sitting caused her skin to harden and split, leading to recurrent infections that necessitated round-the-clock clinical care.
“My body tries to burn my skin and destroy my muscles,” Jennifer said, describing how dermatomyositis affects her body.
“As I lost my voice, I began to fear what might be next. I became worried that essential muscles, such as my heart and lungs would begin to go as well,” Jennifer told the Irish Sun.
Standard topical corticosteroids or emollients intended for atopic dermatitis will fail to resolve underlying autoimmune myopathies and may delay critical systemic intervention.
Individuals undergoing immunosuppressive therapies or intravenous immunoglobulin (IVIG) infusions must strictly monitor for secondary complications, including severe infections and sepsis. Photosensitive reactions in conditions like dermatomyositis require absolute avoidance of ultraviolet radiation, as exposure can provoke systemic flares and severe skin blistering even through window glass.
Jennifer now receives intravenous immunoglobulin infusions every 28 days alongside weekly and monthly medications to suppress her immune system. The treatments allow her to manage symptoms and maintain stability, though any delay or wearing off of the medication causes her immune system to launch renewed attacks.
She spent three years relearning how to walk without assistance and now relies on extensive ultraviolet protection, including tinted vehicle windows, UV-protective clothing, and specialized sunscreens. While doctors cannot guarantee complete remission, the ongoing clinical protocol focuses on preserving her independence and stabilizing her immune response.
“Right now, the goal is to keep me stable and continuously working towards more independence. I truly accepted the idea that I would not make it past 22. But I’m here,” Jennifer told the Irish Sun.
- British Association of Dermatologists.
