Sally is 29 years old and was diagnosed with XLH at 18 months. She is a spontaneous case and no one else in the family is affected. She had 4 surgeries after the age of 17. Sally knows how hard it can be to be different and therefore how important it is to treat people with kindness and acceptance. Part of her is also grateful that she is affected by XLH because it has allowed her to meet some amazing people and see life from a different perspective. In 2019, she took part in a podcast about rare disease and met one of the doctors who discovered the gene for XLH. This meeting was emotional for both of them. Sally says: "Don't take anything for granted and my time to do the things that are important to you. I'm learning to accept that XLH is progressive, and that my operations have limited some of what I can do and may do so even more in future, so I do my best to make sure I do the things that make me happy while I have the chance and to do what I can to stay healthy and active.”
More colours coming daily!
