Psychological Impact of Presymptomatic X-Linked ALD Diagnosis and Surveillance: A Small Qualitative Study of Patient and Parent Experiences

Psychological Impact of Presymptomatic X-Linked ALD Diagnosis and Surveillance: A Small Qualitative Study of Patient and Parent Experiences

X-linked adrenoleukodystrophy (ALD) is a rare metabolic disorder. Symptoms range from cerebral demyelination (cALD) to adrenal insufficiency and slowly progressive myeloneuropathy. cALD is fatal if not treated with hematopoietic cell transplantation in the early stages of the disease course. This ca...

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Bibliographic Details
Main Authors: Cecilie S. Videbæk, Sabine W. Grønborg, Allan M. Lund, Mette L. Olesen
Format: Article
Language:English
Published: MDPI AG 2024-10-01
Series:International Journal of Neonatal Screening
Subjects:
adrenoleukodystrophy
XALD
disease-related loneliness
presymptomatic diagnosis
Online Access:https://www.mdpi.com/2409-515X/10/4/73

Internet

https://www.mdpi.com/2409-515X/10/4/73

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