Life as a Student with Epidermolysis Bullosa
Life as a Student with Epidermolysis Bullosa
This article describes my life as a student with Epidermolysis Bullosa (butterfly skin disease) and my experiences at school.
I didn’t attend kindergarten and started school at age 7. My mom attended first grade with me—she sat next to me at my desk, treated my wounds during the day, and made sure I didn’t fall. Those were very difficult times.
Every night I would wake up and vomit just saliva because I have problems with my throat and swallowing.
In the mornings, I often couldn’t eat or drink. Anxiety about school was also a factor.
Individual Study at Home
From second grade on, I switched to individual home study.
The teacher came to our house twice a week. She was strict and it wasn’t easy for me.
Things got easier starting in third grade when I got a different teacher who took my health condition into account. I eventually finished elementary school just like everyone else.
Alongside school, we often visited various doctors and tried different treatments, drops, and other remedies. Unfortunately, some did more harm than good.
After medications from herbalists, for example, I always ended up in the hospital for a week or two. My mom was always with me in the hospital.
When I turned 18, I was granted full disability pension because my condition and the state of my hands prevent me from doing any work.
You can read more about my life with the condition in the About Me section or in the article Living with Epidermolysis Bullosa.