Both patients and medical experts have known for a while that XLHers tend to be overweight, which isn’t surprising, given that it hurts when we move, and we have an elevated risk of falling or otherwise seriously injure ourselves with physical activity, so we have extra disincentives to get the recommended amounts of daily exercise….
Author: giniajo@gmail.com
Physical therapy for XLH
First, a quick note to update the link for the patient perspective article I mentioned a few weeks ago. Please update your bookmark and use this one when you share it with your health care providers (and friends and family and anyone else who’s interested): https://academic.oup.com/jes/article/6/8/bvac086/6607648 Mostly, though, I want to talk about the other…
Actions for July
Last week, I reminded you about a few of the topics covered in the first six months of 2022. So now I have an easy action for you: let me know what else you would like me to address. Or would you like to write a guest post about something you’ve experienced in dealing with…
In case you missed it
Taking the week off from creating new content, but if you’re new here, I’ve collected links to my favorite posts of the last six months, in case you missed them: Pediatric treatment and the need for adult treatment in a really well-done journal article My take on applying for Social Security Disability benefits: Part one…
The XLH gait
This week I’m sharing some light beach reading for your summer vacation. Okay, I lied, and it’s not really light reading, but it’s still worth your time if not perhaps while on vacation! It’s unlikely that your clinicians (unless you see top experts) will know about the most recent XLH research, since there’s a lot…
Read it now!
The patient-written article about XLH (also relevant to the autosomals and TIO after it’s diagnosed and resistant to surgery) is live in preprint format (may contain some typos and formatting issues)! You can read “Whole Body, Whole Life, Whole Family: Patients’ Perspectives on X-Linked Hypophosphatemia,” online before it’s published in print. The authors are Amber…
Partnership for rare disease gene therapy
I’m sure you know that I believe gene/cell therapy is the future of medicine, and one of the challenges for rare disorders like chronic hypophosphatemia will be justifying the substantial cost of development when the potential market is so small. (Same challenge as for prior forms of treatment really.) Fortunately, we’re in the early stages…
What do you know about XLH?
In honor of summer, when everyone seems to be busier than ever, I’m going to at least try to keep the next few entries a little shorter than usual. Today, a quick reminder about the research being done as a collaboration between The XLH Network, Inc. and Quinnipiac University’s Frank Netter School of Medicine on…
Patient-written article in med journal!
You know how if you fall and hit your head and the paramedics show up, they ask you to tell them the date and where you are and who the president is (I’m fine, the fall I’m thinking of was years ago)? It’s supposed to be proof that you’re brain is intact. Except I can…
Social Security Disability: part four
In prior posts, I went over the basics of Social Security Disability eligibility and the application process, and total disability in the context of XLH. Today, I’ll be sharing some resources to help your attorney and the case reviewer understand XLH in general, as well as specific symptoms/limitations. Once again, first, a caveat, that this…