It’s that time of year for anyone on Medicare: open enrollment (October 15 to December 7), when you get deluged with flyers saying “pick me,” and you need to choose your plan (specific insurer) for the coming year. This year, there are a couple overall changes for the better, in terms of capping out of…
XLH BLOG
New clinical trial
Kyowa Kirin, North America (KKNA) is gearing up for a clinical trial on a new FGF23 antibody, called KK8123 (like burosumab used to be KRN23). The purpose of the trial is to study the new antibody’s safety and effectiveness as doses are increased, presumably to establish an ideal dosage. (The same process was followed in…
What research do you want?
This weekend is the annual meeting of the American Society for Bone and Mineral Research, which, as its name suggests, is the professional organization for researchers who study XLH and other bone disorders. The day before its official start, there’s usually a symposium on rare bone disorders, and this year is no different. There’s nothing…
Side effects
I’m a bit obsessive about reading the labels/inserts for any medications I take, because sometimes I have weird reactions. Many years ago, before I started to pay attention to labels, I was taking Bactrim (antibiotic) for an ear infection, and after a day or two, not only was my ear infection no better, but my…
Back to school
Even decades after graduating from the last of many schools, I still feel like September is a time of fresh starts and new learning. Which is just what we need in the chronic hypophosphatemia world. I often talk about some major XLH-related misconceptions (i.e., it’s purely pediatric, purely bone-related), but there are a number of…
XLH and disability
A while back, I did some posts on applying for disability benefits (not individual legal advice, just general information), but at the time, we had no data on how many #XLH adults were receiving disability benefits, or more generally, any data on the employability picture for us. (You can see the disability benefits posts by…
Not just for kids, revisited
For a while, the XLH community’s battle cry (or one of them, at least) was “It’s not just for kids.” Whenever we went to conferences, doctors would tell us, “Oh, we don’t need to know about XLH, because we don’t treat kids,” and we’d shout, “No! Wait! XLH is not just for kids!” The message…
Good news!
After last week’s rant, it’s time to look for some good news! I’m still happy about the NICE decision in England to approve burosumab for adults (it was already in use for kids, but they had to stop taking it when they became adults). That’s huge, really, and I hope more countries will follow their…
On being a champion
Kinda’ seems appropriate, in the wake of the Olympics, to talk about what it means to be a champion. You all know how much I believe in the benefits of burosumab, so much so that, as a layperson, not a doctor, I think it should be the default treatment for both XLH and TIO (when…
Where to (re)start?
So much has happened in the XLH world (and rare disorder community generally) during my hiatus month. Hard to know where to start! Most exciting is that adult patients in England will soon be able to get burosumab, and teens won’t be forced to stop taking it when their growth plates close! Apparently the details…