I’m back to asking questions again today. But first, a quick little tidbit about TIO. There’s a new case report out about a woman with TIO, where the clinicians initially decided it was unsafe to operate, so they left the tumor in place and treated with burosumab. Some years later, they decided to take another…
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Insurers are not your friends
You probably know this already, but here’s a reminder: Insurers are not your friends. Neither are pharma, hospitals, health care providers, or pretty much anyone else who has a commercial relationship with you. Some may care more (or less) about your wellbeing, but they’re still not your friends. But insurers are the worst. My father,…
Interplay of pain and fatigue
I believe that pain and fatigue aren’t two separate symptoms, but are two sides of a single symptom. Pain drains the body’s energy, leading to fatigue, and pre-existing fatigue from other causes can make the body less capable of coping with pain, so it feels worse. So you can see why I’d be interested in…
Action needed immediately!
If you haven’t seen the news already, the governmental agency (NICE) in England has decided NOT to pay for burosumab treatment of XLH adults. You can read about it, along with a call to action, at the XLH-UK website. One of the actions is to submit comments to NICE. You’ll find a link at the…
Expert Insights
An international group of XLH medical experts have been meeting annually since 2021 to discuss the current state of treatment and research. They recognize that the understanding of XLH is undergoing fairly rapid changes, and also that their colleagues have useful clinical experience to share where hard data is missing. Th group recently published an…
ABCs of XLH, revisited
Back before the FDA approved burosumab in 2018, I did a series called “The ABCs of XLH” for the XLH Network. Since we’re coming up on XLH Awareness Day (June 23 in the Americas), I thought I’d revisit the series to see what I might do differently if I wrote it today, five-plus years later….
How healthy are your ankles?
The flow of newly reported research continues strong, and I almost missed this one until a patient advocate in Australia (Hi, Sandy!) shared it: “The ankle in XLH: Reduced Power, Motion and Quality of Life,” in the March issue of Frontiers in Endocrinology. The whole article is available to read at the link, and I…
Good news
A fellow XLHer recently bemoaned the lack of good news in the XLH community, and I don’t think it was just winter doldrums speaking. Because I tried to think of some good news and couldn’t! At least not at the time. It was a few weeks ago now, and once I was looking for some…
A somewhat personal reflection
Most of my commentaries here are based to some extent on a scientific aspect of chronic hypophosphatemia, but today I’d like to share a bit about the personal side of health care for patients with a rare disorder. My dentist died a few months ago at a sadly young age. I’m heartbroken for her and…
Spread the word: patients have spoken!
It’s time to share the bejeebers out of this article: “Whole Body, Whole Life, Whole Family: Patients’ Perspective on XLH.” As I write this, it’s been viewed online about 750 times, and downloaded close to 200 times. But there are an estimated 12,000-16,000 XLH patients in the U.S. alone, and the article is available worldwide,…