{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,12]],"date-time":"2025-11-12T14:15:34Z","timestamp":1762956934870,"version":"3.41.2"},"reference-count":8,"publisher":"The Endocrine Society","issue":"8","license":[{"start":{"date-parts":[[2022,6,13]],"date-time":"2022-06-13T00:00:00Z","timestamp":1655078400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2022,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>The rare genetic disorder X-linked hypophosphatemia (XLH) is often exclusively considered to impact children, and, as such, adult patients with XLH may receive inadequate care because their symptoms are not associated with XLH. However, studies have shown that XLH has long-term adverse health consequences that continue throughout adulthood requiring comprehensive lifelong care. Indeed, XLH impacts patients\u2019 whole body, whole life, and whole family. XLH does not just affect the bones; symptoms are chronic and progressive, worsening throughout adulthood, and the burden of XLH overflows into the lives of a patient\u2019s family, friends, peers, and colleagues. To ensure early recognition, comprehensive care, and adequate management of XLH, there are key steps that clinicians can incorporate into their daily practice. These include education, a multidisciplinary approach, open communication, and support. Clinician education on rare disorders such as XLH is critical, and healthcare professionals (HCPs) should ensure that patients and their caregivers have access to XLH-related information. As a whole-body disorder, XLH requires a coordinated approach to treatment across specialties. Frequent open communication among members of the healthcare team is needed to increase HCPs\u2019 knowledge about XLH, and open communication must extend to the patient as well to ensure the patient\u2019s concerns and needs are addressed and treatment is tailored to their specific individual needs. Multiple networks of support, including social and psychological support, should be offered to patients and their families. A basic understanding that XLH affects patients\u2019 whole bodies, whole lives, and whole families is the first step toward accomplishing improved patient care.<\/jats:p>","DOI":"10.1210\/jendso\/bvac086","type":"journal-article","created":{"date-parts":[[2022,6,13]],"date-time":"2022-06-13T14:42:49Z","timestamp":1655131369000},"source":"Crossref","is-referenced-by-count":6,"title":["Whole Body, Whole Life, Whole Family: Patients\u2019 Perspectives on X-Linked Hypophosphatemia"],"prefix":"10.1210","volume":"6","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3870-8798","authenticated-orcid":false,"given":"Amber A","family":"Hamilton","sequence":"first","affiliation":[{"name":"Patient advocate , NY , USA"},{"name":"Department of Orthopedic Surgery, Emory University School of Medicine , Atlanta, GA 30322 , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan","family":"Faitos","sequence":"additional","affiliation":[{"name":"The XLH Network, Inc. , Albany, NY 12206 , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gin","family":"Jones","sequence":"additional","affiliation":[{"name":"Patient advocate , MA , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Athina","family":"Kinsley","sequence":"additional","affiliation":[{"name":"Patient advocate , CA , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0841-8917","authenticated-orcid":false,"given":"Rupal Naik","family":"Gupta","sequence":"additional","affiliation":[{"name":"Ultragenyx Pharmaceutical, Inc. , Novato, CA 94949 , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2026-9587","authenticated-orcid":false,"given":"E Michael","family":"Lewiecki","sequence":"additional","affiliation":[{"name":"New Mexico Clinical Research & Osteoporosis Center , Albuquerque, NM 87106 , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"80","published-online":{"date-parts":[[2022,6,13]]},"reference":[{"issue":"12","key":"2022071813464517400_CIT0001","doi-asserted-by":"crossref","first-page":"bvaa151","DOI":"10.1210\/jendso\/bvaa151","article-title":"X-linked hypophosphatemia: a new era in management","volume":"4","author":"Dahir","year":"2020","journal-title":"J Endocr Soc."},{"key":"2022071813464517400_CIT0002","article-title":"The symposium on hypophosphatemia: past, present, and future","author":"Faitos","year":"23, 2019","journal-title":"Voice Patient Rep."},{"issue":"8","key":"2022071813464517400_CIT0003","doi-asserted-by":"crossref","first-page":"bvab070","DOI":"10.1210\/jendso\/bvab070","article-title":"Patient-reported complications, symptoms, and experiences of living with X-linked hypophosphatemia across the life-course","volume":"5","author":"Cheung","year":"2021","journal-title":"J Endocr 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hypophosphataemia","volume":"15","author":"Haffner","year":"2019","journal-title":"Nat Rev Nephrol."},{"issue":"4","key":"2022071813464517400_CIT0008","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1007\/s11914-020-00595-2","article-title":"The rare bone disease TeleECHO program: leveraging telehealth to improve rare bone disease care","volume":"18","author":"Tosi","year":"2020","journal-title":"Curr Osteoporos Rep."}],"container-title":["Journal of the Endocrine 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