I was recently told by someone in the medical community that reminders about the need for multi-disciplinary teams to treat XLH, like what we argued in our ASBMR poster, aren’t necessary, because clinicians already know that about chronic conditions, and XLH is just one of many chronic conditions, nothing special about it.
They’re wrong. With most chronic conditions, everyone knows that they’re chronic. The problem for us is that too many clinicians don’t understand that XLH is a chronic condition, and instead view it as an acute one. Sure, it lasts longer than the typical acute problem like a broken bone, but in the common perception, XLH has a finite treatment period (until the bones stop growing), and a narrowly affected portion of the body (skeleton) instead of multiple affected systems.
There’s a disconnect between what the experts know and what the majority of clinicians know. The experts do understand that XLH is a chronic condition, and that’s great! But it also blinds them to the fact that many, many, many clinicians treating us do not understand the whole-body, whole-life (and whole-family) nature of XLH. Which is why we need to keep putting that message out there until everyone absorbs it.
Need evidence that not everyone has gotten the message? Here’s one — within just a few days of the expert’s statement that assumed everyone already knows XLH is chronic, I ran across this (mostly good) article, Personalized medicine for hypophosphatemic rickets — a new era (yeah, starts off badly with the “rickets” nomenclature, but overall, the information is mostly solid). The author concludes his description of phosphorus/calcitriol treatment with, “Treatment is continued until cessation of linear growth.” The author never goes on to state that stopping the phos/calcitriol at that point is a problem for patients, and never mentions the need for transition of pediatric patients to adult care. As a result, a clinician without XLH experience may well get the impression that XLH is, in fact, acute, rather than chronic. If treatment stops when growth stops, and there’s no mention of later symptoms or transition to adult care, then it would be logical for the article’s readers to conclude that XLH is a finite condition — acute, in other words, rather than chronic — which ends when the growth plates close.
This article is targeted at pediatric specialists, so I can understand why it doesn’t go into the details of adult treatment. But enabling transition to adult care is the responsibility of the pediatric clinician. Transition is part and parcel of complete pediatric treatment, and should be discussed with both the patient and the caregiver during adolescence, with an eventual referral to an adult clinician qualified to treat an XLH patient.
There is, as noted, a lot of good information in the article. It even mentions the need for a multi-disciplinary approach. And it’s great that the author confirms what patients know, that “Compared to conventional therapy, burosumab resulted in superior improvements in radiological rickets healing, serum phosphate, growth, pain, reduction in renal phosphate wasting and functional outcomes.”
The solid information is equal parts encouraging and frustrating. Encouraging, because it adds to awareness of XLH. But also frustrating to see that someone with clear expertise is, however unintentionally, perpetuating old myths. This article isn’t posted to an unreliable, junk-medical-science website , and it’s not written by someone who’s only vaguely familiar with XLH. The article is at a credible site, and it’s written by someone who clearly knows a great deal about XLH, and he still fails to make it clear to his audience that it’s a life-long, chronic condition, rather than an acute one. Which proves my point about the need for broadcasting, repeatedly, until it finally sinks in to all clinicians, that we have a whole-body, whole-life, whole-family disorder. We need to balance out the many existing articles (and the prospect of future ones being published, since new ones seem to pop up monthly, if not even more often than that!) that reinforce the myth that XLH is an acute disorder of bone growth, rather than a chronic, multi-system disorder that persists from birth to grave.
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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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