Mostly just intended to let everyone know that I’m taking July off for birthday month and recovery from cataract surgery and assorted other distractions. I’ll write if there’s breaking news, but otherwise, I’m taking the month off from deadlines and commitments. But first, I need to share a journal article with some really great data…
XLH BLOG
Patients’ point of view
Too often, members of the medical community forget to consider the patient’s point of view when describing or prescribing a treatment or regimen. What I just realized is that sometimes even I can forget, and I’m always advocating for health care providers and researchers to #ListenToPatients. Recently, I wrote about a study that compared surgical…
Enthesopathy breakthrough?
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…
Case reports are problematic
XLH (and to a lesser extent the other chronic hypophosphatemias) has been well-represented in medical journals in the last ten years or so, in the run-up to the clinical trials and eventual approvals of burosumab both XLH and TIO. The articles tend to fall into one of three categories: pure science at the molecular level…
XLH and kidney disease
One of the myths about XLH is that our kidneys are defective, so I like to remind everyone that our kidneys are not the problem. They’re just doing what they’re being told to do, and it’s the messaging TO the kidney that’s the problem. That’s a wee bit of a simplification. It’s more accurate to…
The patient’s agenda
#ListenToPatients is my favorite social media hashtag. Usually, it’s in the context of clinicians disregarding the patient’s lived experience and substituting what they THINK is our experience. But there’s another way that patients need to be heard — when it comes to setting the agenda for conversations. Clinicians, especially those in a family practice, are…
First, do no harm
I swear, sometimes it feels like clinicians are looking for reasons to avoid prescribing burosumab. Take a look at this article, which suggests that orthotic bracing, rather than the more invasive orthopedic surgery, might be useful for correcting bowed legs: “Non-Surgical Strategies for Managing Skeletal Deformities in a Child with X-Linked Hereditary Hypophosphatemic Ricket: Insights…
Hypophosphatemic geese!
I’ve got a weird little tidbit for you today, a journal article called “Early manifestation of hypophosphatemic rickets in goslings: a potential role of insufficient muscular adenosine triphosphate in motility impairment of early P-deficient geese.” It popped up in my email from a Google alert I have for anything new relating to “hypophosphatemic.” I almost…
Orthodontic treatment
Did you have orthodontia when you were a kid? I did, and it mostly worked, but later on, when I started to have spontaneous abscesses, my endodontist, who was competent at root canals but clueless about listening to patients, insisted that the abscesses were due to the orthodontia. I kept telling him that the abscesses…
Misclassified classifications
Last week, when I was double-checking the ICD code for XLH, I found out (a couple years after it happened) that there is a whole new ICD billing code (ICD-11) that’s been adopted, and it has done a really terrible thing for classification of XLH. In the previous code (ICD 10), XLH was classified with…