Excess weight can be even more problematic for chronic hypophosphatemia patients than for the general population, since we already have mobility challenges, which the excess weight can exacerbate. But those mobility challenges also make maintaining a health weight more difficult. Plus, just to really make it seem like the cards are stacked against us, there’s…
Author: giniajo@gmail.com
XLH and primary care, chapter one
This is Chapter One in the series about what the Primary Care Provider (PCP), rather than the specialist, needs to know about their XLH patients. To avoid repetition and keep the chapters from becoming unwieldy in length, I’ve posted the footnotes separately here. For the pediatric PCP The diagnosis and genetics of chronic hypophosphatemia are…
Footnotes
Since the material on XLH for PCPs and Aging with XLH in will be fairly long, I’m putting the footnotes here. Note that I’ve abbreviated the titles in some cases, rather than trying for formal citation format. Footnote 1: “XLH Matters 2022”Orphanet Journal of Rare Diseaseshttps://link.springer.com/article/10.1186/s13023-023-02883-3 Footnote 2: “XLH Matters: an evolving programme”Orphatent Journal of…
Alkaline phosphatase
Alkaline phosphatase (abbreviated to ALP or Alk Phos) is an important lab result for the chronic hypophosphatemia community, but you don’t see it discussed much, at least outside of the more advanced meetings of bone-metabolism specialists. It’s worth getting to know the basics though, so you can spot concerning lab results or you can reassure…
Blizzards & dental basics
I meant to talk about what PCPs need to know about XLH today, but it’s complicated, and I’m digging out from almost three feet of snow, so just a quick and simple (but I hope useful) post this week! Really good little podcast overview of the dental issues of XLH: https://www.drbicuspid.com/podcasts/article/15817596/what-dental-professionals-should-know-about-xlinked-hypophosphataemia I’m not much of…
Aging with XLH, part one
As promised, over the coming months, in between talking about primary care and assorted miscellaneous topics, I’ll be exploring some of the issues that those of us with chronic hypophosphatemia experience once we reach retirement age. I don’t have an outline for the topics int he series yet, so there’s still time for you to…
Sad data
I don’t usually give trigger warnings, but the journal article that I’m discussing today is likely to be really hard to read, and you may find even the second-hand descriptions of it a little traumatizing. I think it’s still worth reading, but you should make sure you’re in the right frame of mind before tackling…
XLH & primary care, the intro
Not all Primary Care Providers (PCPs) have the time or inclination to educate themselves on the rare diseases of their patients, but for those who are inclined, or who might ask, “What are the main things I should know about your XLH to better manage your overall care,” there is no resource that I’m aware…
Latest journal articles
There are so many articles about XLH these days that it’s hard to keep up. I’m not even trying to share all of them, since a lot are repetitive. A few are worth noting though. First, we’ve got three articles out of Australia! The first includes two authors from the XLH Australia patient advocacy group:…
Looking ahead
Last week, I shared some XLH-related highlights from last year, and now it’s time to start thinking about the coming year. My plan (I always have a plan; executing it is the challenge) going forward features two different issues that I expect will each generate a series of monthly posts that I hope you’ll find…