I’m still working my way through the videos from the Third XLH Symposium organized by the International XLH Alliance, and every time I think a presentation can’t be topped, the next speaker is even better! I’m so thankful for all the patient advocates working on our behalf, and especially the volunteers behind this symposium.
If you have some time off during this long weekend (or whenever), I highly recommend starting at the beginning of the playlist linked above and just keep going. The presentations are at a really high level, intended for clinicians, so there are sections that were too deep into biochemistry for me. If you feel that way, it’s okay. Perhaps take a break and come back to it, or just keep listening, and you’ll find that the speaker moves on to something that’s more accessible for you again. Keep in mind that you don’t have to understand every single word to get something useful out of each video, and even one new bit of information can make it worth the half hour or so that each video lasts. You can always go back and watch it again later if you are particularly interested in the topic, and you’ll likely find that things that seemed confusing at first often make more sense the second time through.
I can’t say I understand a hundred percent of everything in the videos, but if you have questions, let me know, and I’ll try to get some answers. I’d also love to hear if there’s anything you found particularly interesting or that you didn’t already know but will come in handy when dealing with your clinicians.
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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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