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!