The hypophosphatemia community is well aware of the prevalence of hearing loss (and other ear issues) among us, but very little is known about why so many of us have these symptoms. There’s been some research with the hyp mouse, but no significant human research that I’m aware of, at least not with respect to possible causes for the hearing issues. Most of the relevant journal articles are just confirmation that the issues exist, along with speculation (not actual data) on the cause.
That’s about to change! A researcher (and ear surgeon) at Massachusetts Eye and Ear, Dr. Divya Chari, wants to study XLHers’ ears! She’s particularly interested in the possible link between XLH and Meniere’s Disease, which according to the the National Institutes of Health is a “disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. You don’t need to have hearing loss or be diagnosed with Meniere’s to be part of the study, although obviously patients with hearing loss and/or known Meniere’s would be particularly valuable for this research.
The study involves a visit (or two) to Mass Eye & Ear in Boston, and parking is covered, along with a modest payment for your time. If you think you might be interested, you can contact the principal investigator, Divya Chari, by phone (612-747-6308) or email (Divya_Chari@meei.harvard.edu).
I’ll be volunteering, and I encourage every XLH adult within driving distance of Boston to consider it, although as I always note, I’m not a doctor and can’t tell you whether participation is right for you. All I can say for sure is that we won’t get answers to our questions about our symptoms if we can’t get enough patients to participate in studies.
If this volunteering opportunity isn’t right for you (or even if it is), I’d appreciate your downloading the flyer below and passing it along to anyone you think might qualify. If you have a moment to share it on social media, that would be great too. If you have a LinkedIn account, you can share it from there.
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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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