Making the XLH Patient Stories

In 2023, XLH UK collaborated with Joe Bonnell, a photographic ethnographer, and filmmaker Rachel Lewis to capture the stories of some of the XLH community. I sat down with Sarah Mitson, Chair of XLH UK, to explore the motivation behind commissioning these powerful videos, the process involved and the value they bring. We also chatted about the newly launched flipbook that our researchers designed, to complement the videos. You can check this out and find out why it is called ‘Navigating Uncertainty – Living with XLH’, here. Read on to find out more about the whole project!

Why does XLH UK commission Patient Stories?

We want to demonstrate that XLH is more than just a medical condition; it has the power to impact most aspects of daily life. The aim was to show a holistic view of the experiences of individuals living with XLH, rather than focusing on medical histories. While a list of symptoms is essential for medical professionals, it fails to capture the full impact on XLHers’ quality of life. Sally, one of the interviewees, expressed this sentiment, saying, “when we talk about phosphate deficiency and weak bones, it doesn’t actually tell you what that’s like to live with”. The goal was to remedy this by facilitating full and honest conversations about the reality of living with XLH.

Patient Stories hold value because they:

  • Give those in our community a voice.
  • Raise awareness and understanding of XLH outside the community.
  • Act as valuable evidence for organisations assessing Quality of Life impact.
  • Guide medical professionals as to where they can offer support.


“We wanted patient stories that were based on deep research covering all aspects of living with XLH. These show the diversity of daily challenges and collectively paint a picture of the lived experience of XLH for many adults.”

Sarah Mitson

Chair, XLH UK

The Process

The journey to achieving these goals was no easy feat, spanning over 6 months. Dealing professionally with such sensitive information required a carefully considered process.

Step One: Bringing in the Experts

It was important to work with qualified professionals with expertise in research and video production. So, we enlisted ethnographer Joe Bonnell and filmmaker Rachel Lewis to bring our vision to life. Their skills ensured the stories were crafted thoughtfully and professionally. We briefed them thoroughly on XLH to ensure that they grasped the complexity of the condition, and agreed an interview guide.

Step Two: Finding the Voices

Selecting the interviewees was guided by a desire to represent the range of XLH experiences while telling compelling stories.

Step Three: Crafting the Stories

Selected individuals participated in interviews within the comfort of their homes, allowing the researchers to build trust and get to know them and their routines. Joe then took photographs and the interviewees shared relevant photographs and objects with him. Next came the video interviews which involved a full day on site. Joe’s attentive approach and Rachel’s filming skills captured the essence of each narrative.  The interview questions were open-ended, allowing for genuine expressions and experiences to shine through. We did not pre-specify a theme for stories, choosing to let them naturally emerge.

Step Four: Final Touches

The raw material went into the editing suite and emerged as compelling videos. Once finished, the participants were able to review the final videos and provide feedback before we approved them.

The Result

This collection of stories highlights quality of life challenges, beyond purely medical issues. Our approach uncovers the less obvious aspects of the condition and helps us to understand experiences in a holistic way. The stories illuminate four very different lived experiences of XLH, including aspects such as ageing and pain management, the role of fitness, surgery and the experience of the whole family.

By shedding light on adult experiences, these stories address the misconception that XLH is “primarily a childhood disease”. They provide stark evidence that adults living with XLH are having to cope with a spectrum of significant, and hugely varied, daily challenges. Watching the stories confirms that XLH patients need ongoing support and specialist care well into adulthood.

To complement these stories, our researchers produced a flipbook focusing on the theme of ‘navigating uncertainty’, an aspect of living with XLH that emerged from all the interviews. If you’d like to learn more about some of the challenges faced by individuals with XLH at different life stages, you can take a look at the flipbook here. And you can watch the Patient Stories videos here

Looking Forwards

We continue to share stories and have recently interviewed Kieron Innes, a talented young gymnast living with XLH. You can see that positive story here! If you would like to share your own story which may help others, please let us know by emailing