I meant to talk about what PCPs need to know about XLH today, but it’s complicated, and I’m digging out from almost three feet of snow, so just a quick and simple (but I hope useful) post this week!
Really good little podcast overview of the dental issues of XLH: https://www.drbicuspid.com/podcasts/article/15817596/what-dental-professionals-should-know-about-xlinked-hypophosphataemia
I’m not much of a podcast person and started watching this with a lot of skepticism, but I was so wrong to have low expectations. The expert is Dr. Juan Yepes, currently at the University of Indiana (where doctors Michael Econs and Erik Imel are also located, and I’d like to think the three of them have had some good conversations). Note that Dr. Yepes has BOTH a medical degree and a dental degree, so he’s uniquely positioned to have a deep understanding of XLH.
In just ten minutes (you can skip the first four minutes of chit chat if time is short), Dr. Yepes hits all the XLH/dental issues that seldom get addressed clearly: 1) the unique role of dentists in early diagnosis, especially for spontaneous cases, 2) the significant number of spontaneous cases, 3) the fact that our abscesses are NOT due to decay, or by implication, poor oral hygiene, and 4) the importance of phosphorus for energy, not just bones and teeth.
This podcast is generally aimed at clinicians, but I think it would also be good for showing to anyone you encounter who would like to understand your (or your child’s) dental challenges. Dr. Yepes uses really basic, but accurate language, that anyone can understand, not just scientists with advanced degrees in bone metabolism!
I love that he never, ever, ever mentions the word “rickets” or “vitamin D.” There’s a moment when he starts to say that the condition is “also known as” and I was tensing in anticipation of his using one of the inaccurate/misleading/harmful terms, hypophosphatemic rickets or VDRR, and I was so pleased when instead he used the (correct and more useful) term “phosphate wasting.”
So check it out, even if, like me, you’re not a big podcast person, and revel in listening to someone who really knows what he’s talking about when it comes to XLH! It’s so refreshing!
Okay, now I’m going back to dealing with being snowed in. I’m fine (amazing neighbors plow and snow-blow, now that I’m no longer allowed to shovel snow), but my town was at the very epicenter of the worst-hit area. We got somewhere between 30-36″ of snow, my two-foot-high raised garden is totally invisible, drifts are even higher than three feet, and there’s even a travel ban!
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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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