One of the best things patient communities can do is to share experiences that aren’t showing up in medical journals, so other patients know what to expect in various situations. There’s something I’ve been hearing from patients the last couple of years, and to a minor extent I experienced myself, which isn’t highlighted in the…
XLH BLOG
Turning up the volume
The voices of XLH (and autosomal hypophosphatemias) patients aren’t being heard. There’s a huge disconnect between the oft-heard claim in the medical commuity that “patients are the experts in their lived experiences” and the rejection of those experiences when they don’t fit the existing medical community’s narrative. I believe that some of those who claim…
All the hypophosphatemias
Throughout this blog, “XLH” is meant as shorthand to include the autosomal variants (autosomal dominant and autosomal recessive hypophosphatemias), and I’ll try to mention whenever information is relevant to only one subcategory of genetic hypophosphatemias. Much of the information will be relevant to the non-genetic TIO (Tumor Induced Osteomalacia) community as well, and where possible,…