If you participated in the research into XLH and Meniere’s (a combination of vertigo and hearing loss, with a known correlation with XLH), there’s a published article based on that data now: “Association of PHEX Gene Dosage With Meniere Disease and Related Audiovestibular Phenotypes in X-Linked Hypophosphatemia.”
I only have access to the abstract, not the full text, but it appears to be deep in the science weeds, focused on genetic variants rather than treatment, and not of any particular practical use for patients. It’s good to have this research published though, if only to make clinicians more aware of the association between XLH and Meniere’s.
The bottom line, according to the abstract, is “In this cross-sectional study of 33 patients with XLH, [male patients with certain genetic] variants developed [Meniere’s] at a prevalence far exceeding population estimates. In contrast, males with [other genetic] variants and … females showed milder audiovestibular phenotypes.”
Also, the Principal Investigator of this research, Divya Chari, M.D., will be attending XLH Day in Indianapolis (October 2-4) and presumably giving a presentation on the findings. The deadline to register for XLH Day has passed, but I’m hoping the main presentations will be captured for streaming on youtube after the event. I’ll let you know if it’s uploaded.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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