The XLH Network, Inc.

10 hours ago

My name is Sarah Sherman and I have an inherited case of XLH from my father who was a spontaneous case. I was born & raised in Idaho, where I currently reside with my husband, Michael & our chihuahua Binx. We both have a sense of adventure that has taken us from Arizona to Idaho, to Texas and back to Idaho.

I had my first bilateral osteotomy at Portland Children’s when I was about 8, due to medications and levels paired with a growth spurt, I had some significant re-bowing of my legs. I was then transferred to Salt Lake Shriners where I was a patient until I was 18 years old. Dr. Armstrong was a blessing when he introduced us to the Taylor Spatial Frame and over my 5th & 6th grade years we corrected the bowing. And, I’m proud to say currently, at 40 years of age, my legs are still straight as the day they took my last pin out.

As an adult I have had my fair share of struggles with joint space loss, sprains & strains, self-confidence issues, & navigating having a rare bone disease in a rural healthcare area, I have learned to be an advocate for myself as well as my family - and I know I owe that to XLH.

This disease has taught me to embrace being that zebra, I earned my stripes and I want to shout to the mountains that these scars and waddle walk, don't
define me, but make me more.

#XLH #XLHAwareness #XLHAmbassador #Advocacy #RareDisease #StrongerTogether ... See MoreSee Less

The XLH Network, Inc.

1 day ago

My name is Christina, I am a mom of 10 children, 7 are adopted, including a set of siblings with XLH. Like most people, I had never heard of XLH before my kids diagnosis.

When both kids, now 4 and 3, came to us from the hospital nursery they were diagnosed as Failure to Thrive. They didn't grow as fast as their peers, and presented with a few physical differences. One of those being Craniosynostosis. Our then 19 month old underwent a major surgery, Cranial Vault Reconstruction, where he suffered a complication. This prompted us to ask for a genetic consultation and testing panel. We finally had answers: XLH!

I then spent my time educating myself and researching everything I could find about XLH, the specialists needed, the care, treatments, all while awaiting his sister's genetic test results, she also had an XLH diagnosis. We were lucky to have a great medical team, and they were quickly started on treatment. Though we were traveling several hours to get to our care team in New York, that prompted our move to Virginia, where my husband and I grew up, and we knew the children's hospital was amazing, and close by. The kids new team of doctors is amazing and have continued our treatment with little to no interruption. A big thank you to the team at CHKD!

Through this journey we found the XLH Network and our new family. A place with people who, though struggling with the same condition, are the most welcoming group I could ever ask to be welcomed into. Though my children have a long road ahead, they are not on this journey alone, they have the support of those who came before them, creating this amazing Network and platform for change, and acceptance!

#XLH #XLHAwareness #XLHAmbassador #Advocacy #RareDisease #StrongerTogether ... See MoreSee Less