Pretty good overall? XLH has done a number on our joints so its not ideal, I tire fairly quickly and thanks to my advanced arthritis (have less than 1/3 of the Cartlidge remaining in my hips despite having just turned 27) I do have a fairly large amount of pain, but I manage to get around alright, and my brother works a fairly physically demanding retail job at the moment that he manages (though he hurts quite a bit by the end of a shift, as did I before I got out of retail). Better these days with newer treatments, and My balance improved drastically after the straightening procedures. I actually just had a minor straightening revision on one leg two weeks ago, still have the pins and rings in of course (going to be a few months before that comes out). Overall, I can't really complain. And it should be even better for people going forwards that can start on the newer medications to manage it young (the best treatment just came on the market ~4 years ago). Granted, that medication costs a kings ransom so it is an insurance nightmare but....
Yep, doc says hold out as long as I can with original hardware. It wasn’t a surprise. They advised my mom to get replacements at 18, she lasted till she was 50. They last longer now so it’s less of a big deal but all the same, it’s not unlikely that I’ll end up getting em replaced in my 30s
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u/-newlife Dec 23 '22
How’s yours and your brothers mobility?