I have a rare genetic disorder

The story of April

Hello.  My name is April.  My story starts at birth but I would really know that untill I was 33 years old.  Growing up I was always tired or forgetful.  When I was 17 I had Bell’s Palsey.  I didn’t get to go to the doctor as much as I should have.  My parents were not vigilant.  They thought I was just a lazy teenager. Looking back now I realize all the signs of my NF2 before I even knew I had it. In my 20s I lost hearing in my left ear.  When I was 33 I was finally diagnoised with Neurofibomatosis Type 2.  I have a tumor in my ear wrapping around the vestisbular nerve causing the deafness.  i have tumors on my brain that cause me alot of pain.  Life is not easy but I am making the best of it.  So far. I am the only person in my family with it.  I try my best to read and research as much as I possible can.  I educate people.

 

*Find others with Neurofibromatosis type 2 on RareConnect, the online platform for people affected by rare diseases