“I Can’t Take off My Shirt or Do My Own Hair”—A Qualitative Investigation of the Symptoms and Impact Experience of Children and Adolescents with Fibrodysplasia Ossificans Progressiva (FOP)

INTRODUCTION: Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, severely disabling, autosomal dominant, congenital disease characterized by progressive multi-focal heterotopic ossification (HO) of skeletal muscle, ligaments, tendons, and fascia. Past FOP studies have focused on the clini...

Descripción completa

Detalles Bibliográficos
Autores principales: Markowitz, Jessica T., Rofail, Diana, Vandenberg, Gerrit, Baldasaro, Jessica, Sanchez, Robert J., Pignolo, Robert J., Keen, Richard, Davis, Michelle, Marquis, Patrick
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2022
Materias:
Original Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9013184/
https://www.ncbi.nlm.nih.gov/pubmed/35429282
http://dx.doi.org/10.1007/s12325-022-02096-3

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9013184/
https://www.ncbi.nlm.nih.gov/pubmed/35429282
http://dx.doi.org/10.1007/s12325-022-02096-3

Ejemplares similares