The story of Vanessa
I was born with XLH – X-Linked Hypophosphatemia, I’m 36 years old and I’ve had 12 leg surgeries and relearned to walk 18 times. I am a Biologist and I research my own rare condition, I am the Leader of the Brazilian XLH Community and the One XLH Voice platform. I am a Researcher and Activist at Instituto Vidas Raras and a member of the XLH Alinaça Internacional Communication Team, together we promote awareness of XLH throughout the world. My passion in life is dancing which gives me great joy.