XLH UK has commissioned four stories to provide an understanding of the impact of XLH on quality of life. These help to inform medical professionals and build awareness and understanding outside the community.
Independent researchers Joe Bonnell and Rachel Lewis worked with volunteers to produce accessible and thought-provoking videos for sharing. These real-life stories shed light on some of the daily challenges that XLH presents and also illustrate a central insight about Navigating Uncertainty. XLH UK is delighted that this research was Highly Commended in recent MRS/ICG Independent Consultants Awards. You can find out more about how this research was done in our blog here.
To accompany the videos of individual patient stories, an overview of new insight gained has been compiled into a readable format. You can read more about the challenges of Navigating Uncertainty in the beautifully photographed flipbook HERE.
Stories
Jim’s story
Jim reflects on some of his passions in life. These have kept him going as a deterioration of his physical health, caused by XLH, has started to limit what he can do. His versatility (such as adapting his photography skills from BMX sports to birds) and his ingenuity in finding devices that help him manage his condition are a testament to his inner resilience.
Janet and Luke’s story
Janet and Luke (Janet’s son) were both diagnosed with XLH as children. Janet explains how her XLH diagnosis deeply affected her confidence, but it has never stopped her from working. Luke recognises that seeing his mum living positively with XLH empowers him to share his approach to staying fit and strong.
Sally’s story
Sally is a positive person, but has had to find ways to accommodate a series of major leg operations. Sally shares with us what it is like to be a younger person with XLH and how she navigates everyday life on crutches. Her active social life is part of her approach to living life to the full, despite the impact of having XLH.
Claire’s story
Claire is part of a multi-generational family with XLH. We hear how difficult finding consistent best care has been for her and her sister, and how treatment and care is improving for younger generations. Claire reflects on the challenges of managing work and family life as you get older and XLH symptoms increase, and the value of having family members who understand and support you all the way.