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.