Patient-Reported Complications, Symptoms, and Experiences of Living With X-Linked Hypophosphatemia Across the Life-Course.
Moira Shang-Mei CheungAngela J RylandsAngela WilliamsKaren M A BaileyJudith BubbearPublished in: Journal of the Endocrine Society (2021)
The multiple burdens imposed on people with XLH throughout their lifetime encompassed the physical, emotional, and social, although the most challenging symptoms or complications differed between ages. Burden was further exacerbated by adults' lack of access to appropriate treatment, illustrating the need for age-appropriate multidisciplinary care.