Meet some of our XLH Network, Inc. members and learn what living with XLH is really like.
Robert lives in Trucksville, PA. He was diagnosed with XLH at 6 years old through lab work. XLH runs on his mother’s side of the family. His mother, maternal grandmother, sister, and many aunts and cousins have all been diagnosed with XLH. However, his two sons do not have XLH.
Robert wanted to share the following pain management tip: “Try to stay active and get out, out in the public. Don’t just sit home and get in that pattern, or you will fall into a depression.” Following his own advice, Robert joined a bowling league 2 years ago and has continued to not let XLH stop him. Robert also enjoys the outdoors and loves fishing, swimming, and gardening. He can even make a mean salsa!
Robert was introduced to the XLH Network by a doctor at Quinnipiac University. He has this to say about finding the Network: “I have a growing XLH family from all over the USA and other countries. It’s nice to talk to each other knowing we all understand what it is like.”
Shay was born and raised in St. Louis, MO and was diagnosed with XLH at 18 months old, and is a spontaneous case. She is married with two beautiful children; ages 3 and 5 months old. Her son was diagnosed with XLH at 12 months old, and her daughter will be tested soon as well.
When asked how XLH affects daily life, Shay responded that age and pregnancy have played a big part in the increased amount of pain that she has every day. She and her husband are looking to move out of their current home, as going up and down the stairs to do simple chores has become increasingly more difficult. However, she anticipates that she will be able to start on the new medication soon, and hopes it will make her a more active mom.
Though there are difficulties living with XLH, Shay does not allow it to get in the way of her passion for sewing. She sews and sells children’s clothes and plans to expand her line to include adult clothing.
Shay found the XLH Network while searching on the internet. Once she connected with others she felt immediately comforted because there were others who had similar symptoms and were going through similar struggles as a result of XLH. “The XLH Network is family to me. I was lost before finding this group of wonderful people, especially since I feel like I don’t always fit in the normal world.”
Kelly lives in Whitt, TX (population: 74!). She is happily married and enjoys spoiling her four rescued fur babies: Soldier, Petey, Cami, and Minnie.
Kelly loves spending time outdoors hunting, fishing, and camping. She is also quite the crafter! She makes custom quilts and can sew almost anything you want. Aside from her bubbly personality and infectious smile, Kelly has a little hidden talent of being able to do accent impersonations.
XLH can be traced back in Kelly’s family as far as her family tree can be researched, with 29 known family members affected by XLH. Living with XLH has given her the willpower and head-strong determination to accomplish her mental and physical goals. Kelly has been on the treatment Crysvita since joining a clinical trial in 2016, which is also when she discovered The XLH Network, Inc.
Kelly has this to say about finding the Network: “Being a member of The XLH Network is one of the greatest blessings for me. I am forever grateful for my XLH family and the long-lasting friendships I have made across several countries. The bond of The XLH Network knows no boundaries.”
Get past the medical jargon and meet real people living with XLH in Weak Bones, Strong Wills: The Stories of XLH.