More research to share! It’s been a busy few months of XLH-related publication.
“A literature review of the healthcare resource use and productivity burden of X-linked hypophosphataemia,” is, as the title states, a review of published articles about how XLHers use healthcare resources (pharmacological products, surgery, dental treatment, hearing treatment, and secondary symptoms’ treatment, e.g., hyperparathyroidism and nephrocalcinosis).
There are a couple conclusions (with data to support them) that may be useful for negotiating with an insurer (or the governmental payor in countries with a national health system). The first one indirectly addresses the myth that XLH is primarily a pediatric disorder: “Healthcare resource use and associated clinical events were generally found to be higher in adults compared with paediatric patients, which is consistent with the natural history of XLH as a progressive lifelong condition.” We all know that’s true, but it’s useful to have scientific confirmation of that fact.
The other important statement is one that contradicts any suggestion that XLH cannot be disabling (the myth that reduced height is the only symptom that matters). The article notes, “Studies also highlighted the negative impact of XLH on school attendance and the ability to work.”
So, tuck this article away in your folder of useful information in case you ever have to explain that adults with XLH experience serious complications and potentially disabling symptoms. And if you ever need to file for disability benefits, this would be a good article to share with your attorney for background reading and possible inclusion in your application for benefits.
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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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