Pili Torti My daughters Rare disease journey

The story of Jenny

My daughter was diagnosed with Pili Torti in January after a hair biopsy. In November last year she developed patches of dry, brittle, kinky, straw like hair. Since then it has spread to the entire middle layer of her hair. There is no cure and it is such a rare disease that the only information out there are a couple case studies. Praying for awareness and more information.Â