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.
To hear more from Gin, check out the links below:
Weak Bones, Strong Wills, which Gin compiled and edited and have two essays in. This the Canadian link, but it’s available world-wide.
Voice of the Patient report, which Gin wrote.
An article on XLH that Gin co-wrote entitled Whole Body, Whole Life, Whole Family: Patients’ Perspectives on X-Linked Hypophosphatemia
And finally, Gin’s XLH amazing blog
You can reach out to Gin by emailing her at firstname.lastname@example.org
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.