Thursday, April 28, 2016

The stories of XLH

We're embarking on a new project to collect the stories of people living with XLH in a book tentatively titled, Weak Bones, Strong Wills, the Stories of XLH.

One of the things we hear so often, from patients, caregivers and the general public is "I never knew ...."
  • I never knew anyone like me.
  • I never knew adults with XLH might benefit from treatment.
  • I never knew XLH existed.
The recently announced Natural History project will approach these issues from a data-based, scientific perspective, but we know there's more to a medical condition than the data and science. The Network is already working hard to connect XLHers with others like them (virtually at our forum and in person at XLH Days), educating clinicians about treatment options and raising awareness of the condition generally. We do that through our website, social media, and personal appearances, and those are all important activities, but they're somewhat ephemeral. We'd like to expand our reach with a book that would document the intangible, non-data aspects of our experiences and be a more lasting record of what it's like to live with XLH at a time when there is no truly effective treatment.

We're looking for a wide variety of anecdotes and essays about living with XLH. It could be about life fifty or sixty years ago, when the condition had a different name and doctors didn't know it was a phosphate-wasting disorder. It could be about the excitement of participating in a cutting-edge clinical trial today, which might lead to a cure. Or about something in between.

Everyone has a story (or twelve!), and they don't have to be a professional writer to tell it. If you're an accomplished storyteller, go ahead and send us a polished manuscript. If you're less comfortable with the written word, that's okay too. We still want to hear what you can tell us. Just write up the anecdote as if you were talking to a friend, without worrying about the sentence structure or grammar, and we can work with you to polish it up.

We anticipate having sections in the book to address various stages and symptoms, like getting the diagnosis, skeletal symptoms, dental symptoms, chronic pain, emotional symptoms, other childhood challenges, other adult challenges, the evolution of treatment,  and – don't forget – the successes when challenges are overcome. Stories can be from patients or from the caretakers of patients, but the important thing is that these are the subjective stories of patients, not the objective stories of data that you'd find in a medical journal.

That list of topics is just to start you thinking. Don't let it limit you if you have an interesting story that doesn't fit neatly within those categories. Your out-of-the-box story may be just what we want, and we won't know until you tell it!

Before settling in to write and submit, check out the writers' guidelines and rules for submission here: (Note that you must have an active account at our discussion platform to access this information. You can register here:

Finally, we hope to include as many different stories as possible, but please keep in mind that we won't necessarily be able to include all submissions, especially if there's a lot of overlap in the experiences. Some may simply not be included at all, and others may be excerpted to combine with other related excerpts into a a single essay with several members' experiences.

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