I’m taking a break (unless there’s more breaking news, and there may well be — I’ve edited this twice already to push the date back, because of critical calls for action) until January 10, 2024.
To tide you over, I’m sharing links to a few recent posts that are my favorites or that I think have the most useful information.
I’m starting with a sentimental choice, but I think it’s important to remember how far we’ve come in our understanding and treatment of XLH in the past 40-ish years, even if it’s still imperfect: https://www.ginjones.com/what-my-father-knew/
Those of us who are used to pain and disability have a bad tendency (in my experience) not to ask for the help we need, so this is a reminder that you can ask for help, and that occupational therapy may be a good resource, and not one that most people think of: https://www.ginjones.com/occupational-therapy/
If you’re looking for some heavy reading (not right after a big holiday meal!), try the articles collected here: https://www.ginjones.com/recent-journal-articles/
I don’t write or talk much about hyperparathyroidism, although it’s an issue for many (most?) in our community. It’s important to keep an eye on it though, and your clinician may not think to mention it (unless they’re a top expert). Here’s some basic info: https://www.ginjones.com/hyperparathyroidism/
And finally, if you didn’t read the article referenced in this next link already, I’m going to keep bugging you until you do! https://www.ginjones.com/expert-insights/ It’s just so good, so patient-focused, and so clear on what the obstacles are to our accessing the best possible treatment for ourselves and our loved ones.
See ya’ on the other side of the holidays!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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