Before we get started on the new year (yeah, I’m a little behind on everything already), here’s a quick collection of what I think are the most useful posts of 2025.
Where does FGF23 come from: https://www.ginjones.com/where-does-fgf23-come-from/
An area of research that needs more study is better understanding of exactly why the genetic variant that causes XLH also causes an overproduction of FGF23. This article showing that organs other than the bones can produce is FGF23 opens up new avenues of research that could have benefits for both the chronic hypophosphatemia community and the health of the general population, where FGF23 is involved with many more common conditions (including heart and kidney disease).
Non-XLH research: https://www.ginjones.com/non-xlh-research/ Just as XLH research can provide insights into more common disorders, non-XLH research can provide insights into treatment for XLH. This post is about Metformin, a drug primarily used to lower blood sugar levels in patients with type 2 diabetes. It turns out to also be useful for knee osteoarthritis (presumably related to reducing inflammation) in patients with excess weight. Which makes me wonder if it would be useful for XLHers, since we tend to have both excess weight and osteoarthritic knee pain. (Not giving medical advice here, just thinking out loud. If you think it might be useful, check with your clinician, preferably someone with XLH expertise.)
Only questions in the building: https://www.ginjones.com/only-questions-in-the-building/ A series of questions I raised that I still don’t have answers to (and don’t really expect to any time soon, but it would be nice if people were at least talking about them).
APEX: https://www.ginjones.com/apex/ Good news on the combining of global natural-history data about XLH.
Mutation and phenotype: https://www.ginjones.com/mutation-phenotype/ Interesting data in the dental context about a possible correlation between one specific genetic variant for XLH and increased severity of dental symptoms.
Resources for your PCP: https://www.ginjones.com/resources-for-your-pcp/ An attempt to help you help your PCP understand the basics of XLH. I didn’t have really good suggestions, but I’m hoping to improve your options in the coming year (more about this in next week’s newsletter).
Catching up on my reading: https://www.ginjones.com/catching-up-on-my-reading/ An overview of several recently published articles.
Next week, I’ll be introducing some topics I hope to explore more fully in 2026. Let me know if there’s anything you’re particularly interested in.
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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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