Here is the first post in our “Meet a Member Wednesday” series. Meet Shay W! She 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 those 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.”
Thank you, Shay for sharing your story with us! If you are interested in being interviewed, please send an email to our Board member, Kimberly Murray, who will be conducting these short interviews: firstname.lastname@example.org.