Next Monday is International XLH Awareness Day, and I hope that sometime between now and then you’ll check out the excellent social media campaign that the International XLH Alliance is running.
The theme is what it means to be part of a patient community, and the Alliance is sharing insights from patients/parents of the various member organizations. If you’re not already following the Alliance on social media, I highly recommend it. You can find them here:
- https://www.facebook.com/xlhalliance
- https://www.instagram.com/xlhalliance/
I was going to include a few quotes, but they’re all so good that I couldn’t choose, so you’ll have to go read them for yourself! I can offer a wee bit of a spoiler though. The main message is that “patients know more about the lived experience of #XLH than anyone else could possibly know.” But go check out the different approaches that individual patients have to reaching that conclusion. It’s worth the time, I promise!
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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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