Aug 23, 2023
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...
Aug 23, 2023
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...
Aug 23, 2023
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...
Aug 23, 2023
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...
