I was diagnosed at the age of 26 in 2022. I experienced extraordinary NF2-SWN effects every day. I often fall from vehicles because of balance problems, my hearing is impaired to the point of being deaf, my vision is impaired, and my body is weak on the right side.
I was fired from my job because they found out I was deaf and had NF2-SWN. I felt like ending my life. When I struggled with six operations to remove tumors in the brain and spine and the installation of tubes in the brain due to hydrocephalus, I felt my extraordinary struggle to fight this rare disease.
I have accepted myself with my current situation. My situation is not an obstacle to me achieving a better future. This is God’s way of telling stories in my life. I am happy when I spend my days with positive thoughts and positive activities; I enjoy writing, reading books, and providing positive support to friends who experience the same thing, seeking knowledge about this illness so that I can be an encouragement to myself. Seeing parents, doctors, and friends who really care about me also gives me happiness.
Favorite Song
Life Cycle
Dream Superpower
The fairy fairy wants to change sadness into happiness
Favorite Food
Rendang
