Patient Stories
“We want our stories to go beyond the medical issues and focus on lived experiences” Sarah Mitson, XLH UK Chair

Jim's Story

XLH UK case study with Jim

The value of real-life stories are that these not only support those within our community but also help us to positively influence others on some of the daily challenges that XLH presents.

XLH UK has commissioned four stories of living with XLH to provide an understanding of the impact on quality of life, guide medical professionals as to how they can help and build awareness and understanding outside the community.

XLH UK case study with Jim

The value of real-life stories are that these not only support those within our community but also help us to positively influence others on some of the daily challenges that XLH presents.

XLH UK has commissioned four stories of living with XLH to provide an understanding of the impact on quality of life, guide medical professionals as to how they can help and build awareness and understanding outside the community.

Independent researchers Joe Bonnell and Rachel Lewis have worked with volunteers to produce accessible and thought-provoking videos for sharing. We are delighted to be able to share the first of these with you ‘Jim’s story’ with more to follow soon.

Independent researchers Joe Bonnell and Rachel Lewis have worked with volunteers to produce accessible and thought-provoking videos for sharing. We are delighted to be able to share the first of these with you ‘Jim’s story’ with more to follow soon.

XLH UK case study with Jim

There are many ways to share your experiences, if you have a story to tell, please let us know by emailing contact@xlhuk.org