When we learnt about neurofibromatosis.

By Michaela, Neurofibromatosis type 1, United Kingdom, February 23, 2021

In March 2020 lillie was just 3 months old, she was admitted to hospital and diagnosed with neurofibromatosis type 1. We had never heard of nf before this. This has being a whirlwind of a journey so far. However lillie is a strong independent little girl. With the support of our wonderful doctors and ctt foundation and neurofibromatosis support groups I know lillie will be just perfect the way she is,  just like the other nf warriors. 


*Find others with Neurofibromatosis type 1 on RareConnect, the online platform for people affected by rare diseases 

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