I decided I wanted to raise awareness quite early on after my myasthenia diagnosis. I set up a table outside my local Tesco, handed out flyers and spoke to as many people as I could. I could only raise awareness for two hours and then my voice started going. I raised £30. A lot of people don’t carry cash now, so I handed out myaware’s text donate number.

The first symptom of myasthenia gravis I experienced was blood blisters in the mouth in 2020. I contacted my GP, and he called me in immediately where he arranged a blood test and a maxillofacial appointment all within the same week. He also told me to go to the hospital straight away. Within a fortnight of seeing him I ended up calling in to my local hospital as I couldn’t talk. The hospital contacted Maxillofacial and said, “She’s ill!” I had the Maxillofacial appointment and was told to speak to my GP again, and that if it gets worse go to A&E. That’s what I did. After that I went to ENT as my voice kept going. I was sending them videos so they could see what effect it was having on me. I had reflux, lumps on my arm which I didn’t know what they were and my face was red and blotchy.

Before I was finally diagnosed, I was under the care of seven different consultants. I was finally diagnosed in 2021 after I had the electromyography tests, as all of my blood tests had been clear.

l had to shut down my business as I couldn't work anymore. If I do half an hour light-to-medium walking I'm sweating, but my temperature comes down by two degrees. It's gone almost as low as 32.5 degrees, which is hypothermia levels. My temperature is regularly between 33 and 35 degrees, which is very unusual. I've also been told I only have a third of my lung muscle function, as I have bronchial asthma. I have been advised to take my Ventolin several times a day and Seretide twice a day.

Every single day my neck swells up and goes icy cold, my words are slurred and I have difficulty opening my jaw. I think it’s all to do with how myasthenia presents itself. This has only started to happen since I was diagnosed.

I received benefits advice from myaware’s Benefits and Welfare Advisor, as I claimed for loss of voice. I still take videos when I lose my voice. It takes me two days to get over that problem. I have to use my stomach muscles to force my voice out. I was told by specialists that when this happens not to speak.

I want to raise as much awareness for myaware as possible, as my pharmacist and diabetic nurse didn't know what myasthenia was. If I see first aiders I always go and chat with them about myasthenia. Most of them have never heard of it either.

People's Stories