Gin Jones is a retired lawyer and a USA Today bestselling author of cozy mysteries. In her spare time, she makes quilts, grows garlic, and advocates for patients with rare disorders. Gin has spontaneous XLH, and has lived through the whole range of approaches to treatment (so far!), starting with massive doses of vitamin D and calcium, a decades-long gap in treatment as an adult, and then a brief stint with phosphorus and calcitriol a few years before joining a clinical trial for burosumab in 2016.
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It is important for children with XLH to have close followup by a physician experienced in XLH and have growth closely monitored. XLH affects standing height and disproportionately impacts leg length. For more information on general growth curves for children with X-Linked Hypophosphatemia, please reference this study from the NIH National Library of Medicine.