Get your copy now!

Our book, Weak Bones, Strong Wills, the Stories of XLH is available now at major online retailers!

Here's an excerpt from the back cover copy:

Our bones are soft, our lives are hard, but we are strong and resilient. We persevere, despite all the challenges. But if there's one thing that can slow us down, it's the lack of solid information about the real-life consequences of our rare medical condition. That's why we're here to tell the real stories of XLH and the people affected by it. Not the medical jargon, not the numbers and charts, but the real-life experiences of patients and their families. 

Thank you to everyone who submitted a story. We couldn't have done this without you!

Once you've read the book, we hope you'll post a review at your distributor of choice. Reviews are especially important for reaching readers who may not know anyone with XLH, but would like to read about what it's like to live with a rare medical condition, as well as those who have XLH but haven't heard of the Network yet!

Here's where you can get your copy:

Paper copies
Amazon: https://www.amazon.com//dp/1975845803/

Digital copies

Amazon: https://www.amazon.com/dp/B075MQMZXG/

Bn.com: https://www.barnesandnoble.com/w/weak-bones-strong-wills-the-stories-of-xlh-the-xlh-network-inc/1127123821?ean=2940154555545

Kobo: https://www.kobo.com/us/en/ebook/weak-bones-strong-wills-the-stories-of-xlh

Smashwords: https://www.smashwords.com/books/view/748082

What's your story?

We're coming up on the deadline for submission of stories for Weak Bones, Strong Wills, The Stories of XLH (December 31, 2016).

If you'd like a peek at what others are writing about, here are a few snippets (each paragraph is by a different writer) reminiscing about childhood experiences, which have been the bulk of submissions so far. We have some pieces on the adult experience and parenting, but we'd love more. (We're greedy that way.) And we'd especially love to hear from a non-XLH sibling of an XLHer, about what it's like living with someone who has a rare disease. And from XLHers in their eighties (and above), either directly or as told to a younger generation.

For the first peek, here's a comment by a nine-year-old who's still living the childhood experience of XLH: "I have a best friend I met because of XLH. We met on XLH Day. We see each other at the doctor’s office sometimes, and once we even went to New York City together."

And now a collection of memories from growing up with XLH:

• "Bicycling became my favorite thing to do. I think because it was less painful to run to keep up with the other kids. On my bike I was free and nobody could tell that I waddled when I walked and couldn’t run very well. I covered a lot of ground – going to the beach, to the river banks and to the Dairy Queen for a cone. I still haven’t given up the habit for over fifty years now."
• "I remember blood tests, followed by special lunches with my parents. I remember feeling special because I got to visit the school nurse every day to gulp down my bitter phosphorus-laced apple juice."
• "I hated seeing the phlebotomist with her little tray of needles and vials. I would curl my fingertips inside my hands so she wouldn't see them and decide to prick me!"
• "I remember attending our high school Junior Prom . . . using canes for assistance in walking [while in a cast after surgery]. The theme of the Prom that year was "Candyland," and I decorated my canes with red and white crepe paper to look like peppermint sticks."

We know there are so many more stories out there, and we'd like to have a truly representative sampling. Please take the time to write yours down and send it to us. If you're having trouble getting the words right, just make some notes, do what you can, and send it to us with a note in your cover letter, asking for some editorial help, and we'll be happy to provide it.

You can find more information and the submission guidelines at our discussion platform here: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=226.0 If you haven't already registered with the forum, you'll need to do that first, or else send an email for a copy of the guidelines to: XLHstories at gmail dot com.

So many stories, so little time

Remember our call for stories about living with XLH? The deadline was October 1st, but we've been so busy working for  you that we missed our own deadline.

We've got a bunch of great stories for Weak Bones, Strong Wills, The Stories of XLH, but it's become obvious that we won't be reading and organizing them for a few more months, because of other commitments, so we're extending the submission deadline to December 31, 2016.

If you meant to send in a story and, like us, ran out of time, you've got a second chance now. And if you didn't mean to send in a story ... well, why not? We've got some great material already, but as we all know, there's such wide variability in the symptoms and experiences of XLHers, that it's a challenge to try to represent the many facets of living with XLH. We need every story, every angle, every voice, to make this the brilliant book we think it can be.

You can find more information and the submission guidelines at our discussion platform here: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=226.0 If you haven't already registered with the forum, you'll need to do that first, or else send an email for a copy of the guidelines to: XLHstories at gmail dot com.

What's your story?

The Network's board is getting ready for XLH Day, where we're hoping to hear the stories of everyone there. That's only a small portion of our membership, though, so we still want to hear your stories for our book, Weak Bones, Strong Wills, The Stories of XLH.  

So far, we've got submissions from as far away as Russia! And experiences from people ranging in age from early twenties, born after the current treatment was developed, through to those who were born much longer ago, when the treatment ranged from simply ineffective all the way to potentially harmful.

We've got stories from patients and from parents of patients. We'd really like to hear from a sibling of an XLHer, about living in a family affected by the disorder without actually having it oneself.

We'd also like some more focused bits, thinking about a single incident that characterized a single moment in a long life of challenges. Things like how phosphorus supplements and vitamin D tasted before they were introduced in pill forms -- and all the ways you found to hide them instead of ingesting them! Or dealing with the local bully who made fun of your gait/height. How you overcome someone telling you that you couldn't do something you wanted to do. Or perhaps a recollection of a favorite doctor or nurse or teacher or friend, who made a difference in how you looked at your medical condition.

If you already have a topic, and you're having trouble finding the time to sit down and write your story, or if you get blocked when you sit down to write, consider using a voice recorder app on a phone to tell the story (or get an older family member to tell his/her story) in rough form. Then you can transcribe it and do some polishing, without having to face a blank page!

For more info and for submission rules, go  here: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=226.0

Don't wait too long. The deadline is October 1, 2016, which will be here before you know it!

Writing prompts for the stories of XLH

Sometimes, when writers get writers' block, they turn to "prompts" to get them started. Usually, once they start writing, they can keep going, and it's just getting over that initial hump that's difficult.

Maybe you're experiencing the same thing. You want to write about your experience with XLH for our book, Weak Bones, Strong Wills, but you can't decide which story or don't know where to start. 

No problem. We've got a few prompts for you. If you're stuck, pick one of them and just write whatever comes to mind. You can always go back and edit it. You might even find that you'll drift off into a totally different topic, and that's good too. 

This isn't remotely a comprehensive list of topics, but perhaps one of them will inspire you:

• What's your earliest memory of treatment? (E.g., Gin remembers, at just-under-three-years-old, getting a shot and learning that it didn't hurt as much if she didn't watch the needle go in.)
• What's your earliest memory of being different and  how did you cope with it?
• Is there a doctor, nurse or other medical professional (or perhaps a teacher or friend?) who made a difference in your life, beyond the treatment itself?
• What would you most like to be different about your life if you could have fixed only one physical thing about yourself (e.g., to be taller or stronger, or to have more energy, better hearing, or fewer dental abscesses), and how would that have changed your life? Would you have answered this question differently at different stages of your life?
• What was it like the day you met someone else with XLH for the first time (particularly for spontaneous cases who don't have family members with XLH)?
• Have you accomplished something that people find surprising because of your diagnosis, and how do you deal with their surprise?
• What's it like to be in a clinical trial as either an adult or a child, and if you've been in them at both age, how were the two experiences the same/different?
• If you have an older/younger family member with XLH, what have you learned from him/her?
  
• How do you explain your condition to other people, and how do they react?

Now, get writing. We're anxious to hear your story! The deadline is October 1, 2016, and the details (submission guidelines) are here: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=226.0

Don't let the stories be lost!

Today, our social media coordinator, Gin Jones, is here to talk about Weak Bones, Strong Will, the Stories of XLH, our planned book on the XLH experience: 

My mother's uncle was a great oral storyteller. Even when I was a self-absorbed teenager, I loved listening to him. Unfortunately, he never wrote his stories down, and we never thought to capture any of them, so they're lost to us now.

Perhaps you have a family member with XLH (or who raised an XLHer) who is a similarly good storyteller. Don't let those stories be lost like my Uncle Charles's! Take some time to record them, either with your smartphone (tips on how to do it here: http://www.wildmountainechoes.com/equipment/audio-recording-with-a-smartphone/ ) or the old-fashioned way, by taking notes and then typing them up.

Either way, we'd love to read those stories and consider them for publication in our book. We're not set up to transcribe recordings, so you'd need to get them into written form (and a .doc file) by either transcribing them verbatim (and we'll edit them into a narrative) or summarizing them in a narrative format.

It's a win for everyone -- you'll get to spend some quality time with that family member, the storyteller will get a wider audience, and we'll have a documented a bit more about the experience with living with XLH.

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: http://vps.xlhnetwork.org/~xlhforum/forum/index.php?topic=226.msg355#msg355 (Note that you must have an active account at our discussion platform to access this information. You can register here: forum.xlhnetwork.org)

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.