Patient Stories

“I was always searching for answers to why I had all of these issues with my knees and as I got older I started having back pain and stiffness.”

EMILY

—age 34

Patient Stories

“As I transitioned into adulthood, it was difficult to know really how to take care of myself.”

ASHLEY

—age 26

Patient Stories

“Living with XLH is a silent pain.”

SEAN

—living with XLH

Patient Stories

“I can’t control the symptoms of my XLH, but I can control my attitude.”

CHERYL

—living with XLH

Want to share your XLH story? Contact us at XLHResources@Ultragenyx.com.

Ashley, living with X-linked hypophosphatemia

Meet Ashley

“I was really able to take ownership of XLH when I was able to connect with other people that had XLH.”

Mackenzie, living with X-linked hypophosphatemia

Meet Mackenzie and Rhonda

“Living with a rare disease—it just means that I am a human that has an obstacle in their life to overcome.”

Natascha, living with X-linked hypophosphatemia

Meet Natascha

“I’ve just had to learn to take things a little bit slower, not try to take on the world in one day.”

Sean and James, living with X-linked hypophosphatemia

Meet Sean and James

“I think it is really important that people do not just ignore it…knowledge is power in this case.”

Dillin, living with X-linked hypophosphatemia, with his mother

Meet Melissa and Dillin

“Each day we have to do a lot of things, but XLH has made us stronger, better people.”

Cheryl, living with X-linked hypophosphatemia

Meet Cheryl

“Try not to focus on having a disease… and live your life to the fullest.”

Gini, living with X-linked hypophosphatemia

Meet Gini

“You just have to check in with your own body…I think the point should be to be have a good life.”

Emily, living with X-linked hypophosphatemia

Meet Emily

“Just knowing that there was an answer and a reason why was probably the best part of learning my diagnosis.”


 

Ultragenyx-sponsored Social Resources

Learn more about XLH and connect with others in the community

View XLH events