Bladder extrophy?

Elizabeth • Mommy to my miracle 10.14.20💙 Happily with the love of my life 01.28.16 Taking life on in bites 🌸 Ily Leo 11/17-01/18❤️

Does anyone know anyone or themselves who have or do suffer from bladder extrophy, I was born with it and I am trying to maybe find someone who has knowledge and understands the obstacles I face.