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…
Author: giniajo@gmail.com
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…
Diagnostic journey
There’s a really interesting new article about the diagnostic journey for XLH patients, in the context of electronic health records (EHR): “The diagnostic odyssey in children and adolescents with X-linked hypophosphataemia.” A lot of the data analysis in this new article is beyond my expertise, but if I understand it correctly, they took a massive…
In case you missed it
I’m taking a break this week from original content while I prepare for a new book release on Monday (A Dowry of Death, the latest in my Helen Binney mysteries). To tide you over, I’m sharing some links to my favorite posts of the last three months, in case you missed them and want to…
Actions, not platitudes
I had another molar extracted on Monday. Nothing out of the ordinary for XLHers, but it got me to thinking about advances (or lack thereof) in dental care and access, especially for those of us who have more than our fair share of dental issues as a direct result of an underlying medical condition. There…
XLH is a progressive disorder
If you haven’t seen the video already, there was a segment about XLH on a televised talk show recently. You can watch it here: https://www.youtube.com/watch?v=BJoNh_X5GMk&t=908s It’s basically a paid infomercial sponsored by Kyowa Kirin, NA, advertising the need for treatment, rather than a specific treatment. There was another similar one a while back sponsored by…