I talk a lot about enthesopathy (calcification of the soft tissue where it attaches to bone), in part because it’s a large part of my own disability, but also because it’s widespread in the hypophosphatemia community while at the same time getting little attention in research and literature.
There’s some brand new research though that shows a possible path to treating that enthesopathy! It’s aimed, not just preventing it from worsening, but actually reversing some of it, which isn’t currently possible. The research involves mice not humans, but it’s a good first step!
I don’t have access to the whole article, “The role of GDF5 in regulating enthesopathy development in the Hyp mouse model of XLH,” but here’s the conclusion of the abstract: “These data indicate that blocking [certain biochemical] signaling may prevent enthesopathy in patients with XLH.”
Something else that’s good about that article is that the conclusion is taken from the “plain language summary.” I really appreciate the Journal of Bone Mineralization Research for including that option, because the abstract is pretty deep in the science-jargon weeds, and the plain language summary is a nice acknowledgement that patients (and non-bone-mineralization experts in the health care community) may be reading these articles and can benefit from understanding the basic concepts even if we don’t necessarily follow all the details that require understanding biochemistry. Sometimes journal articles use unnecessarily complicated language, which I find annoying, but other times, as in this article, the complicated language is necessary for its primary audience (other experts in XLH and/or enthesopathy). Having the plain-language summary is a nice addition, allowing everyone to get something out of the article, regardless of our expertise. I hope more journal editors start doing something similar (and crack down on excessive jargon when it’s just confusing without adding much value).
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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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