We are pleased to share with you a new patient story in which we hear from Amy, who opens up about the personal choices she made when starting her family. 

Amy has XLH and, after careful consideration, chose IVF to ensure that her two daughters would not carry the XLH gene. The NHS provided financial support for this through a program called Pre-implantation genetic testing for monogenic or single-gene disorders (PGT-M). Her journey is one of informed decision-making and hope for the future.

We understand that having a rare genetic condition like XLH can throw up many questions and uncertainties about the future. If you would like to learn more about XLH and family planning options, you can explore our further website resources here.

We would like to thank Joe Bonnell and Rachel Lewis for their expertise in bringing this story to life. And a big thank you to Amy for sharing her experiences with us. You can watch Amy’s Story here.