I’m going to change things up a bit this year, since “embrace change” is my motto for the year. First, I’m going to have a once-a-month post on the basics of XLH. Some of you may recall the “ABCs of XLH” series I did for the XLH Network, and our understanding of the issues has changed enough that I think it’s worth updating the basic information. I’ll be tackling one definition at least once a month, starting next week. Look for the “XLH basics” tag on these posts.
Another once-monthly topic will be a recommended simple advocacy action that anyone and everyone can do. I hope you’ll join me in doing at least some of them! Here in the U.S., we’re going to need a LOT of advocacy in the coming years, on a wide range of issues that affect us all, and it can be a bit overwhelming, so we don’t do anything. For myself, and you, if you’re interested, I’m going to limit my focus to issues that affect the health care system, like opposing the nomination of Robert F. Kennedy, Jr., as the Secretary of Health. He seems to think that better nutrition could cure everything that ails us, including genetic disorders like XLH, and we are a classic example of why that’s not true. I’ll also be advocating for the protection of Medicare/Medicaid, which are absolutely critical for a lot of XLHers’ access to effective treatment. I’m also worried about possible cuts to the National Institutes of Health, which funds basic research, like the work that went into identifying the existence of FGF23, the key factor in XLH and a contributory factor in more common disorders like kidney disease and heart disease.
Not everything about the newsletter will change, of course. I include an implied “good change” in my motto of embracing change, so I won’t be tossing things that work, simply to change things up! I’ll still be bringing you relevant news and research, including a possible brand new approach to XLH treatment which is in the very earliest stage of submission to the U.S. FDA. And I’ll let you know when that clinical trial (and others) start recruitment.
If there’s anything else you’d like me to address, please let me know!
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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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