Patient Stories

“Don’t give up. If you’re like me, you don’t know what’s going on until later in life and there’s answers out there.”

EMILY

—patient with XLH

EMILY’S JOURNEY WITH XLH

Watch video (20 minutes)

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

EMILY’S STORY

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Patient Stories

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

ASHLEY

—age 26

ASHLEY’S STORY

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Patient Stories

“Living with XLH is a silent pain.”

SEAN

—living with XLH

SEAN AND JAMES’S STORY

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Patient Stories

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

CHERYL

—living with XLH

CHERYL’S STORY

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HOME / PATIENT STORIES

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.”

Emily, living with X-linked hypophosphatemia

Emily’s journey
(20 minutes)

“Don’t give up. If you’re like me, you don’t know what’s going on until later in life and there’s answers out there.”

 

Ultragenyx-sponsored Social Resources

Learn more about XLH and connect with others in the community

View XLH events