It’s time to share the bejeebers out of this article: “Whole Body, Whole Life, Whole Family: Patients’ Perspective on XLH.” As I write this, it’s been viewed online about 750 times, and downloaded close to 200 times. But there are an estimated 12,000-16,000 XLH patients in the U.S. alone, and the article is available worldwide, so it’s obvious that we need to spread the word a whole lot more!
I hope you’ll bookmark the link now, so you can share the article with any and everyone you think might be even a tiny bit interested in it. Family, friends, clinicians, nurses, strangers you meet on the street …. Okay, maybe not strangers on the street, but definitely your primary care provider, your specialist, and your kids’ primary, specialist, and nurses. Share it with your health insurance company if they give you a hard time about approving treatment. Share it with your attorney and the case reviewer if you file for disability. Share it now, while you’re thinking of it, and then share it again next month, when international XLH awareness day comes along (October 23), share it again! As my rant last week demonstrated, there are a lot of clinicians left who need to learn that XLH is a whole-body, whole-life, whole-family disorder and trying to treat just a small piece of the puzzle will leave us to suffer unnecessarily.
You can share it one on one in an email or text (it’s “open access,” the fancy term for “free,” so you can provide a link to the article in your message) and more broadly online on your preferred social media platforms (and feel free to share my posts at facebook/twitter/linkedin/instagram when I mention the article or share your own thoughts along with a link to this blog post). It’s easy, and you never know who needs to hear the patient perspective (hint: everyone needs to hear it!).
The article is copyrighted, and we respect copyright (because we support creators by not stealing their material, right?), so you can’t copy and paste the whole article anywhere. It gets tricky figuring out how much of an article you can copy and paste without violating copyright, but (not giving legal advice here) if there’s a sentence or two that really resonates with you, then it’s usually fine to copy and paste that into your own social media post, with quotation marks around it and a comment on why that resonates, and a link to encourage people to read (and share) the full article at the publisher’s website.
Another way you can “share” the article is to adopt the language as your own — use the “whole-body, whole-life, whole-family” description whenever you’re asked about XLH. It’s a small thing, but making sure you consistently use accurate and patient-focused language whenever you talk about XLH, especially with medical professionals, can have a positive effect over time. So if a health care provider asks how XLH affects you, you can say that, because it’s a whole-body, whole-life, whole-family disorder, it affects …… [and list the key symptoms that bother you].
There may be interest in the article outside the hypophosphatemia community too, so consider sharing the link with people you know who have other disorders, especially rare ones, and especially ones with overlapping symptoms, like pain/fatigue and enthesopathy. The content of the article is specific to the lived experience of hypophosphatemia patients, but the very existence of the article is relevant to other patient advocates as an example of how an article can by written by patients, unfiltered by clinicians/researchers. Our article is unusual in that it was written directly by and from the point of view of patients (with help from a professional medical writer and feedback from an endocrinologist and representatives from Ultragenyx to make sure the science was accurate). Most “patients’ perspectives” are written by a scientist who is essentially collating patients’ comments. That filtering can skew the perspective, not intentionally, but just because the author many not entirely understand some of the nuances of the patient experiences, even though they understand the science.
So join me in spreading the word this month (and next) — XLH patients have spoken, and our words are worth a read!
***
Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
If you’d prefer to read this blog as a newsletter, sent straight to your inbox, please sign up here.