Vanessa is 35 years old. She is a spontaneous mutation, and was diagnosed at the age of 4. She has had 12 surgerys in her life, but she says that these surgeries gave her character and a lot of empathy for others. Her motto is: “The ability to reinvent oneself is the greatest ability of a human being.” Vanessa is a biologist and scientist, and is researching her own rare disease which gives her more autonomy and self-care for her life and for the advice of other rare patients.
Vanessa lives daily with chronic pain, including that which comes from a Chiari malformation, which often gives her debilitating migraines.
Vanessa's greatest love is dancing, when she dances it seems to her that she is flying with her eyes open, it fills her with real joy then she loves to be in her own skin. Regina Próspero @reginaprospero is her role model, inspiration, godmother and mentor in her life of rare. With her she learns a lot about wisdom, intelligence, knowledge, generosity, simplicity and what it means to be humble.