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From Healthy to Hospitalized in Days: One Woman’s Journey Through Rare Lymphoma | Patient Stories | PatientWing

When Cheryl Airy woke up with a puffy face one summer morning in 2022, she brushed it off. It wasn’t allergy season, and she didn’t usually get them anyway. But the puffiness returned the next day—disappearing entirely by the third. That afternoon, her back seized with a sharp, stabbing pain that left her screaming when she tried to lie down.
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A Life Rewritten: Living Fully with Dermatomyositis | Patient Stories | PatientWing

When Megan Kirby Lance first noticed a rash in 2016, she didn’t immediately worry. But the telltale butterfly shape across her face, followed by patches on her elbows, knees, chest, and back, signaled that something deeper was happening. “I’m a hairstylist and makeup artist, so when my hands became involved, I knew I couldn’t ignore it,” Megan recalled. “That’s what pushed me to start digging.”
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Understanding the Impact on Mental Health with a Rare Disease Diagnosis | PatientWing

Rare disease patients may struggle with the physical symptoms of their condition, but also the psychological burden of living with a disease that is poorly understood, often misdiagnosed, and has limited (or non-existent) treatment options.  Managing a rare disease—attending appointments, treatment regimens, and time spent resting or recovering—takes rare disease patients away from doing and spending time with people they love.
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