Excess weight can be even more problematic for chronic hypophosphatemia patients than for the general population, since we already have mobility challenges, which the excess weight can exacerbate. But those mobility challenges also make maintaining a health weight more difficult. Plus, just to really make it seem like the cards are stacked against us, there’s at least speculation that our low phosphorus levels may make us burn calories differently, in a way that contributes to excess weight, even if we eat and exercise approopriately.
I don’t know of any research or advice that’s specific to our community, but there’s a good new article from the Osteogenesis Imperfecta (OI) community with an expert who talks about the subject in a supportive manner that recognizes that weight loss/maintenance is not a simple matter: “Talking about weight can make a difference.”
My favorite insight is: “[P]eople who are short in stature, as is the case for some individuals with OI, need fewer calories and may benefit from different dietary advice than their peers.” I like that the expert is acknowledging that it’s not a simple matter of doing math and then severely restricting our calories. I assume you can’t just take the daily calories needed for the “average” person, and then reduce them by a percentage calculated by the difference in height, and just set that as your goal.
The problem, of course, is that I’m not sure anyone knows how or what we should be doing differently. Like, should we be eating a reduced number of calories, but not a directly proportionate reduction by height? Or perhaps we should be eating a different distribution than the average person among protein, carbohydrates, and vegetables. Like, should we keep the same protein and cut back on the other categories, or vice versa? And if we do that, will we get enough of all the requisite types of nutrition? Should we eat smaller, more frequent meals? Or the same size meals but fewer of them? I have no idea, and I don’t think anyone else does either, but acknowledging that ignorance is the first step toward discovering answers!
So if you’re having weight issues, check out the article linked above, while also being aware that it is talking specifically about another condition. OI and XLH have a lot of overlapping symptoms, but very different causes, so the risk/benefit analysis may be somewhat different.
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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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particularly like this insight from the expert: