Sannah's Story

Bismallah - In the name of God.

Hi there! My name is Sannah, I am 23 years old, from Glasgow and I was diagnosed with myasthenia gravis in July 2014.

My diagnosis was complicated by having a condition from birth called Albinism that affects my vision amongst other things. When I started getting double vision and watery eyes in the summer of 2013, doctors put it down to having Albinism and said, because I was half way through university, I was demanding more from my eyes. I was told to rest more. For someone that can't sit still and barely had spare time between working and studying, resting was the last thing I wanted. However, I took the advice on board and I had every intention of starting 2014 positively, but that's when things got weirder.

For the next few months everyone saw changes. Eating took so much effort that my appetite diminished and I became underweight. I stopped having energy for the gym, getting up took time, I couldn't lift my arms long enough to style my hair and my mum always asked if I was okay because I wouldn't smile and stopped talking as much because my speech would become slurred. The biggest sign of something being wrong was when I started falling down with no warning. Even standing for too long led to me finding the ground. I began to avoid holding my nephews and feeling guilty for it but the last thing I wanted was to drop them.

Between April and July 2014, my GP had tested for everything possible. I remember when I told her, "when people are standing up and I am sitting, If I look at them for too long, my head feels heavy." I saw the light bulb above her head... another test. This led to my diagnosis and a lot of relief to know that what I had been feeling was not in my head.

I decided I needed to take time out of studying and I had no choice but to leave work. My life took a stand still while I started treatment, which was one of the hardest parts to deal with because it made me feel utterly alone and scared for my future. My biggest fear of becoming boring was looming over me as I ran out of things to talk about and spent too much time at home.