A rare genetic disorder has left a woman 'growing a second skeleton', as her 'back is a sheet of bone' and her jaw is 'locked'.
The 27-year-old now uses a wheelchair and says she does not let the disease hold her back as she dreams of starting a family, finding her 'forever home', and going swimming again. Carli Henrotay was diagnosed with fibrodysplasia ossificans progressiva (FOP) – a rare genetic connective tissue disorder characterised by the abnormal development of bone – when she was five years old, and she said she is effectively 'growing a second skeleton'.
Following her diagnosis, the American blogger said she had to adapt to a new way of life, as trauma, such as a fall or an invasive medical procedure, could result in bone growth. “The advice my doctor gave my parents was to make sure I’m careful but still enjoy being a child… so we just found safer ways for me to interact with the world,” Carli said.
