Putting Hope Into Action After My Son’s Porphyria Diagnosis
On a bright day in mid-2009, I covered my son Brady, then 3, from head to toe and tucked him deeply in my arms. We rushed into a new doctor’s office — our potential…
Hope in Action — Kristen Wheeden
Life changed for Kristen Wheeden when her youngest son, Brady, was diagnosed with erythropoietic protoporphyria in 2009. Kristen set out to learn as much as she could from both patients and doctors about porphyria. She has great hope for improved quality of life for patients living with porphyria, yet firmly believes that hope is ineffective without action. That is her motivation to act as a fierce advocate for porphyria patients and families and to support critical research. Hailing from Bethesda, Maryland, she enjoys life with her husband, three sons, and two dogs. Kristen serves as the president of the United Porphyrias Association.
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Celebrating UPA’s immeasurable impact on its 3rd birthday
When the youngest of my three sons was diagnosed with erythropoietic protoporphyria (EPP) in 2009, I was a hot mess. His gut-wrenching pain was unbearable for him, and it didn’t make sense that…
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