You may get tired of hearing me rave about how great the presentations were at the International XLH Alliance’s symposium this summer, but really, I’ve never seen anything quite this impressive, both individually and as a collection.
The video on dental issues is the first time, to my recollection, that I’ve ever seen a presentation from someone who was both a hands-on dentist and a researcher of XLH teeth specifically. It’s quite in-depth (remember, these videos are aimed at clinicians, not primarily for patients, although much of it is perfectly understandable by patients), but also concise (only about forty minutes). If you or your child has a dental professional who wants to learn more about XLH, they could learn most of what they need to know from this one video while eating lunch.
Also, if you or anyone you know who has a child with XLH (sorry, it has to be XLH, not a different hypophosphatemia) and lives in/near Paris, France, keep an eye on this study (or if it looks interesting to you and your child is eligible, contact them now to ask to be notified when it begins recruiting). I believe the speaker in the video is involved in this study, but it doesn’t name a specific principal investigator, just the hospital sponsoring it. They’re looking to see if they can seal kids’ teeth in a new manner to prevent abscesses. As always, you should do your due diligence when considering enrolling in a study, but this one looks like it’s worth at least learning more about it if you know a child who might qualify for it.
I wanted to end this post with a more general dental reference for you and your clinician, but couldn’t find one. At least not one that is focused on the teeth themselves, the way the video above is. The only really solid article I could find that was specific to our dental issues was focused not so much on the formation of our teeth and treatment, but on how our dental issues affect our daily lives, “Oral health-related quality of life in patients with X-linked hypophosphatemia,” and the video speaker is one of its authors. There is an overview of the dental science though, so it may be useful for a dental clinician who’s open to learning more about chronic hypophosphatemia.
Something I’ve noticed about the quality of lfie articles is that they always, always, ALWAYS mention the burden of not being heard. It’s true in the dental context, as well as musculoskeletal and pain contexts. The study linked above documents patients reporting that they weren’t believed by their dental professional, and later cites another study that reported, “almost all participants reported more than one experience in which health care professional challenged their reported symptoms (e.g. bone pain) or questioned their diagnosis of XLH. Participants expressed concern about taking advice from providers who were not knowledgeable about XLH.”
Unfortunately, we’ve all had that experience, and it does make it difficult to trust health care providers, especially when it can be difficult to figure out if a given provider really is knowledgeable about hypophosphatemia, having treated not just one or two patients, but dozens, or is just faking it based on some vague recollection from med school or ten minutes of Googling. I’ve recounted some of my own experiences of clinicians pretending they knew more than they did about XLH (and generally getting it all wrong, which at least makes it easy to identify the clueless ones). What about you? What’s your best (in the sense of being worst) story of a clinician who thought they knew more about XLH than they really did?
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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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