Vollständiger Abstract
Worum geht es in dieser Arbeit?
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.
Bibliografischer Nachweis
Publikationsdaten
- Autor:innen
- Mary-Catherine Walsh, Sarah O’Mahony, Ronan Brennan
- Quelle
- Clinical and Experimental Dermatology
- Publikation
- 2026-01-01
- Band / Ausgabe
- Nicht angegeben
- Seiten
- Nicht angegeben
- ISSN / ISBN
- 0307-6938, 1365-2230
- Zitationen
- 0 laut Crossref
- Referenzen
- 0 hinterlegt
Zitieren
Zitierfähiger Nachweis
Mary-Catherine Walsh, Sarah O’Mahony, Ronan Brennan (2026). “Millions of Superheated Needles”: A Patient’s Experience of Erythropoietic Protoporphyria. Clinical and Experimental Dermatology. https://doi.org/10.1093/ced/llag381
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Themen, Förderung und Nutzung
Lizenzhinweise: Lizenz 1