Mariana

MARINA

Marina was born in Madrid, Spain and now lives in Pennsylvania. Marina has two daughters, both in college, and both also have XLH. She may only stand at 4’6” but her personality adds at least another foot! Marina has been an avid advocate for the XLH Network since she discovered the group in 2002. She was one of the organizers of the first two XLH Day events. When she is not advocating for XLH, Marina is enjoying her retirement from a fulfilling career as Senior Product Manager of a software program for chemical engineers to design petrochemical plants. She traveled all over the world with her job and still takes every opportunity to meet other XLH patients. Marina’s mother has XLH and was treated with osteotomies for the (at the time) “unknown condition” that was thought to be related to the parathyroid. When Marina showed her bowed legs to the doctors, they immediately gave her a diagnosis of “whatever your mother has”.  She then started receiving treatments with casts and braces. She finally learned she had XLH when her oldest daughter was diagnosed with it at 16 months old. Her second daughter was then diagnosed just a few months later.

Thank you, Marina for sharing your story with us!