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Management

Prevent further complications

The progressive nature of XLH may lead to increasing clinical consequences over time.1-3

Early management of XLH in both adults and children may help prevent further complications.

Comprehensive care for patients

Symptoms of XLH are nonspecific when considered individually and vary between patients. Accordingly, patient care requires a comprehensive team of healthcare practitioners and specialists to provide treatment and disease education for you and your patients.

These specialists may include:

  • Endocrinologist1
  • Nephrologist1
  • General practitioner1
  • Pediatrician1
  • Occupational and physical therapists1
  • Orthopedic surgeon2
  • Rheumatologist4
  • Clinical geneticist5
  • Pain specialist1
  • Genetic counselor5
  • Dentist1

XLH management

Managing XLH symptoms will depend on the severity of their clinical presentation. Some ways to help manage symptoms may include:

  • Medications and supplements6
  • Orthopedic interventions6
  • Physical therapy6
  • Dental care 6
  • Genetic counseling6
  • Treatment for hearing loss6
  • Preventing primary or secondary complications6

Other strategies to help manage XLH symptoms:

  • Physical therapy to support and prevent further bone and joint pain6
  • Consistent oral hygiene to prevent tooth pain and infections6
  • Workplace or school support6

Management goals for children and adults

Legs of Isla, a young child living with XLH, walking on a lawn

Children

  • Normalize levels of serum phosphorus to promote the healing of rickets and osteomalacia1
  • Prevent outcomes such as bowing of legs and impaired growth1

Due to the progressive nature of XLH, pediatric patients will eventually need to transition in care as they develop into young adults. Healthcare providers can play an active role in helping these patients become proactive in their care by helping educate them on the disease and encouraging self-management.7

Young adults

Transitional care for young adults is important because of the progressive nature of XLH. As pediatric patients grow into young adults, it's important to educate them on their disease and how to take care of themselves.

Help them by promoting disease education early and encouraging independent self-care as they grow older. Patients can develop healthy habits proactively and prioritize their needs.

Legs of a young adult patient with XLH walking along a wooden path

Adults

  • Normalize levels of serum phosphorus1
  • Promote the healing of osteomalacia1
  • Prevent and/or heal fractures and pseudofractures1
  • Relieve bone, muscle, and joint pain and/or stiffness1
The letter i within a diamond denoting a callout specific to the XLH disease-monitoring program

A careful transition for young adults with XLH may promote favorable disease management.7

Genetic counseling

For patients with X-linked dominant disorders like XLH, genetic counseling can be an important element in helping patients manage their condition, identify family members at risk, learn about existing protections against insurance and employment discrimination, and connect with patient support organizations.

Connect the symptoms and take the next step

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Patient case studies of XLH

See sample case studies of adults and children.

Read the case studies
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Learn more about XLH

Watch videos to get more information about how XLH affects the body.

See the videos
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XLH resources and community

From case studies to brochures, find resources for you and your patients to understand more about this rare condition.

HCP resources Patient resources
Stay connected

Set up time with a representative to talk more about XLH, or sign up for news and information about XLH.

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References:

1. Dahir K, Roberts MS, Krolczyk S, Simmons JH. X-linked hypophosphatemia: a new era in management. J Endocr Soc. 2020;4(12):bvaa151. doi:10.1210/jendso/bvaa151 2. Carpenter TO, Imel EA, Holm IA, Jan de Beur SM, Insogna KL. A clinician’s guide to X-linked hypophosphatemia. J Bone Miner Res. 2011;26(7):1381-1388. doi:10.1002/jbmr.340 3.Hamilton AA, Faitos S, Jones G, Kinsley A, Gupta RN, Lewiecki EM. Whole body, whole life, whole family: patients' perspectives on X-linked hypophosphatemia. J Endocr Soc. 2022;6(8):bvac086. doi:10.1210/jendso/bvac086 4. Linglart A, Biosse-Duplan M, Briot K, et al. Therapeutic management of hypophosphatemic rickets from infancy to adulthood. Endocr Connect. 2014;3(1):R13-R30. doi:10.1530/EC-13-0103 5. Ruppe MD. X-linked hypophosphatemia. In: Adam MP, Everman DB, Mirzaa GM, et al., eds. GeneReviews®. Seattle (WA): University of Washington, Seattle; February 9, 2012. Updated April 13, 2017. https://www.ncbi.nlm.nih.gov/books/NBK83985/ 6. Trombetti A, Al-Daghri N, Brandi ML, et al. Interdisciplinary management of FGF23-related phosphate wasting syndromes: a Consensus Statement on the evaluation, diagnosis and care of patients with X-linked hypophosphataemia. Nat Rev Endocrinol. 2022;18(6):366-384. doi:10.1038/s41574-022-00662-x 7. Dahir K, Dhaliwal R, Simmons J, et al. Health care transition from pediatric- to adult-focused care in X-linked hypophosphatemia: expert consensus. J Clin Endocrinol Metab. 2022;107(3):599-613. doi:10.1210/clinem/dgab796