Wednesday, January 23, 2019

Meet A Member Wednesday - Robert D.



It’s Meet a Member Wednesday! Our next awesome member for you to meet is Robert D! He was born in New Jersey and currently lives in Trucksville, PA. Robert 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 (ages 19 and 28) 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.”

Fun fact about Robert: He used to be able to solve the Rubik’s Cube in under a minute!




Monday, January 21, 2019

XLH Community Connections

 
We have finalized the dates and locations of our XLH Network regional patient meetups for 2019! We will be calling these regional meetups "XLH Community Connections."

The purpose of XLH Community Connections is to connect you with doctors, patients, and caregivers that live in your region. Each XLH Community Connection will be a full-day educational and social event that will consist of presentations by physicians and other clinicians, patient stories, and roundtable discussions. As part of the XLH Community Connections, we will also have a fun-filled children's program to allow children ages 5-12 to connect with each other. Feel free to bring the whole family!

If you live near one of the planned locations, we hope that you will join us and have the opportunity to connect with others in the XLH community! If we aren't coming to a location near you in 2019, we will host 3 more XLH Community Connections in 2020 tentatively planned for Orlando, Chicago, and Dallas.

NOTE: We also plan to host a gathering in San Francisco on April 12th, the night before the Ultragenyx Patient Day. We hope to connect with many of you there!

Wednesday, January 16, 2019

Meet a Member Wednesday - Shay W.




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: kimberly.murray@xlhnetwork.org.