My Story with Niemann Pick C

By Christian, Niemann-Pick disease type C, United States, March 1, 2021

My name is Christian, I'm 44 years old, and I live in Florida. My father is Swiss and my mother is Brazilian. I was born in Brazil... I speack Portuguese and English... I always had difficults in my academic years but nothing stopped me from graduating from College, business administration. During my school years I was diagnosed as dyslexic but in 2011 a final diagnose changed my life, and Niemann Pick C became part of myself. I always loved to travel and I have been to more than 50 countries and my favoriy one is Cambodia where for 6 months I worked as a missionary in Sinecvil. 

Niemann Pick C changed my life and today I can only walk with the help of a walker... my voice is fading and I have difficults to remember things and facts... my friends desapeared... but... I have a wonderful family, my father and my mother are my best friends, they are very king, patient and helpful... and we enjoy time out or travelling to Brazil and Switzerland where we have capable people to help with my difficulties. I take my illness with great dignity and I leave up to God to guide my future

 

*Find others with Niemann-Pick disease type C on RareConnect, the online platform for people affected by rare diseases

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