“Millions of Superheated Needles”: A Patient’s Experience of Erythropoietic Protoporphyria

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ID: 327651
2026
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Abstract
This patient perspective explores the profound physical and psychosocial burden of Erythropoietic Protoporphyria (EPP), characterized by agonizing phototoxic reactions described as "millions of superheated needles". Through a personal account of diagnostic delays and the life-changing impact of a clinical trial for afamelanotide, this submission highlights the urgent need for equitable pediatric access to emerging therapies to mitigate the lifelong "invisible" burden of this disease.
Reference Key
openalex_W7208762598 Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Mary-Catherine Walsh, Sarah O’Mahony, Ronan Brennan
Journal clinical and experimental dermatology
Year 2026
DOI
10.1093/ced/llag381
URL
https://doi.org/10.1093/ced/llag381
Keywords Keywords not found

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