i am rare and i am proud

By Kearyn, Neurofibromatosis type 1-Noonan syndrome, United Kingdom, February 23, 2021


i am kearyn "kicky" i am 8 years old. 

i have NF TYPE 1 with noonan syndrome but i also have congential glaucoma in both eyes , renal artery steniosis and moyamoya disease making me extra rare. i am registered blind . i am a very happy boy who loves sonic the hedgehog and thomas the tank engine

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.