Wait, don’t skip this post, because you think you don’t need occupational therapy (OT)! It’s not what you think! OT can help with any activity that “occupies” your time, not just the ones you get paid for. Think of it more like “Daily Activity Therapy,” instead of OT, and you’ll see why it could be useful.
I was chatting with a non-XLH friend who’s experiencing some temporary limitations on her daily activities, so she was totally new to the wonderful world of coping tools. It reminded me that I stumbled my way to an array of fixes to daily challenges over the years (like making my own dressing stick out of a large dowel and a cup hook), but you don’t have to go through that process on your own.
If you’re having daily struggles with basic life activities (or even if you aren’t consciously aware of them, and just want to double-check whether you have issues you’re in denial about, since a lot of us deny our symptoms well past the point of needing help), consider talking to your primary care provider for a referral to an Occupational Therapist. If your insurer doesn’t require referrals, you can contact an OT directly, but check with your insurer first to make sure it’s covered by your insurance, so you won’t get any nasty billing surprises.
If anyone tries to tell you there’s no need for OT (I’m looking at you, clueless clinicians and greedy insurance companies), you can show them articles from prestigious medical journals to support your request. A comprehensive approach to treating #XLH (and by implication, the other hypophosphatemias), is widely recommended and includes OT. My favorite example, although I’m biased, is “Whole Body, Whole Life, Whole Family: Patients’ Perspectives on XLH,” which concludes “As a whole-body disorder, XLH requires a coordinated approach to treatment across specialties to provide comprehensive care. This includes endocrinologists, nephrologists, orthopedic surgeons, occupational and physical therapists, pain management specialists, dentists, and primary care clinicians.”
Some clinicians and insurers will discount that article, despite its placement in a highly-regarded journal, because it’s “just” the patients’ point of view. Fortunately, there are other articles from experts whose bona fides can’t be ignored. Most now mention a “multidisciplinary approach,” but don’t always specific occupational therapy in particular. A good article that does specify OT is: “Interdisciplinary management of FGF23-related phosphate wasting syndromes: a Consensus Statement on the evaluation, diagnosis and care of patients with X-linked hypophosphataemia” where they conclude, “Follow-up can involve dieticians, physiotherapists, occupational therapists, social workers and psychologists.”
And, finally, just a quick reminder that if you’d like to get physical therapy as well as (or instead of) occupational therapy and need confirmation that it’s medically necessary, check out “An Evidence-based Physical Therapy Prescription for Adults With X-linked Hypophosphatemia.”
I’d love to hear from you if you’ve consulted an occupational therapist and what you learned, of i you haven’t seen an OT, what coping tools you’ve discovered on your own.
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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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