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

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Authors

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Publication Details

Journal
Clinical and Experimental Dermatology
Published
2026-09-04
DOI
https://doi.org/10.1093/ced/llag381
Primary Topic
Porphyrin Metabolism and Disorders
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Sarah O’Mahony, Mary-Catherine Walsh, Ronan Brennan
Clinical and Experimental Dermatology
Porphyrin Metabolism and Disorders
article

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

Sarah O’Mahony, Mary-Catherine Walsh, Ronan Brennan
article en

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.

Clinical and Experimental Dermatology
University Hospital Galway (IE)
Openalex Percentile: Top 17%
Porphyrin Metabolism and Disorders
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