Some of you know me from the XLH listserv days when I was a frequent poster and also the subscription manager. But if you’re newer to the community, you may be wondering, who is this person who thinks she understands at least some of the XLH experience? So let me share a little of my…
XLH BLOG
Patient voice at ASBMR
Back in 2003, The XLH Network, Inc., made history by presenting a poster at the annual conference of the American Society for Bone and Mineral Research (ASBMR), entitled “Self-actualized Perceptions of X-Linked Hypophosphatemia Suggest a Pro-active role for Patient-Support Networks in Managing Patients with this Rare Metabolic Bone Disorder.” It was groundbreaking, since as far…
New research survey
The XLH community has been fortunate in recent years to have researchers interested in studying us, and if anything, the research opportunities continue to grow. I try to volunteer whenever I’m eligible, and I’ll highlight opportunities that I think are particularly interesting. Some research involves more travel than I can handle, but other forms of…
Canadian XLH Network
I’m trying to be mindful that not everyone with XLH lives in the U.S., and we’re stronger together, so I’ll be highlighting the best support/advocacy work I see, regardless of where it’s happening. I’m not currently affiliated with any particular patient group, but I’m a big fan of the Canadian XLH Network. They’ve only been…
Darkest before dawn
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…
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,…