You know how if you fall and hit your head and the paramedics show up, they ask you to tell them the date and where you are and who the president is (I’m fine, the fall I’m thinking of was years ago)? It’s supposed to be proof that you’re brain is intact. Except I can never answer the first question about the date, or even the day of the week. I mean, I’m self-employed, working at home on projects that take months to years to complete, with no external deadlines, and I can write on weekends as easily (or with as much s truggle) as on any other day of the week, so why would I keep track of something as meaningless as the date or the day of the week?
Well, add in a long weekend with a Monday holiday, and I REALLY have no idea what day it is. So I completely forgot to write this week’s blog post, which I usually do on Sunday, except this week’s Sunday felt like a Saturday, since Monday was still the weekend, and then Tuesday felt like Monday, and Wednesday felt like Thursday and …..
So all I’ve got this week is a preliminary announcement that there’s going to be a patient-written article about the XLH lived experience in the Journal of the Endocrine Society later this year. The title is “Whole Body, Whole Life, Whole Family: Patients’ Perspectives on X-Linked Hypophosphatemia” and that’s pretty much the main lesson we want clinicians to take away from the piece — that we have a whole-body, whole-life, whole-family disorder, and need to be treated accordingly.
It’s been in the works for more than two years now (more proof that writers have no need to know what the date is), and is an offshoot from the work the same authors did for a poster at the American Society for Bone and Mineral Research conference last year.
I’m excited about it primarily because of the chance to share the patient experience with the specialists treating us, especially those who are only treating one or two of us, and don’t have the wider perspective that comes with treating dozens or even hundreds of patients with the same condition. The idea is that if we repeat the whole-body, whole-life, whole-family mantra often enough, clinicians will be better prepared to treat the entirety of the condition, not just the most visible/obvious elements (short stature and bowed legs).
I’m also excited about the article’s acceptance for publication because of what it says about the medical community listening to patients. I worked on the project primarily to give a voice to the XLH community (and much of the argument in the article can be claimed by the other hypophosphatemias too), but it’s also gratifying to see that it is now possible for patients to get their work published in a medical journal. It’s not uncommon for a patient or two to be listed as co-authors on journal articles — like XLH patient Pol Harvengt has been on a number of articles, but it’s extremely unusual to see an article where the majority of the authors (four out of six) are patients (although one is both a patient and as of a few days ago, also an M.D.). I hope that in the future, we’ll see more such truly patient-focused articles, where patients are telling our own stories, in our own words, without having to go through an intermediary.
In recognition of this type of advocacy, and since this week was supposed to be on the topic of actions you can take to support patient advocacy, I’ll ask you, for your June action, to memorize what we took to calling the “whole- trinity” (whole-body, whole-life, whole-family) as we worked on that article, and think about how you can include that message into conversations about the XLH patient experience. The more often clinicians hear that message, the more likely the words will make an impact, if not for your treatment, then for the next patient’s treatment.
Bottom line for just about everything I write and say in my patient advocacy: XLH (and the other chronic hypophosphatemias, including TIO after it’s diagnosed) is a whole-body (not just rickets, not just bones/teeth), whole-life (not just kids affected), whole-family (not just the patient affected) disorder requiring comprehensive treatment.
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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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