Zenaida's Story

Our friendship started in Vale da Amoreira, Portugal, where we grew up. I, Zenaida, was 17 and Maria was 7 years old. We used to go to the same Kingdom Hall. In 1998, when I was 23, I noticed I had difficulties speaking and my voice would sound very slurred. I struggled to chew and to swallow food and I started to lose weight. I couldn't keep my balance and I would fall on the floor and struggle to get up. I was also feeling tired all of the time.

One day, I woke up seeing double, so I rushed to the hospital, but they said, "nothing was wrong" as my vision was back to normal. I had had enough, so I decided to see a private doctor, but they thought I had depression, they even asked me if I had a crush on someone! The doctor sent me home with some vitamins with the order to go back a week later if I wasn't better. After I went back, they got me a bed in hospital to do tests and I finally left seven months later.

Being in hospital meant I went four months without treatment, the blood tests were all coming back negative and they sent me home despite me not being able to move or eat. In September 1998, I got a letter asking me to go to another hospital and within 10 minutes, the doctor told me I had myasthenia gravis.

Because it took a long time to diagnose, I had a crisis and I spent nine days in ICU. I then had a thymectomy, however, just 20 days later, I had another crisis and was in ICU for six days as I had overdosed on medication.

In 2012, I experienced my third crisis and after this one, I was put on methotrexate. Ever since then, my voice has been improving and I have been fighting to go back to work.

Maria's Story

I was born and grew up in Portugal, and, when I was 17 years old, I had a relationship with Zenaida's older brother, which resulted in me getting pregnant.

I moved to London in September 2003 aged 18 and at the end of 2006, I started to notice the symptoms of myasthenia gravis when I experienced double vision. However, as the symptoms weren't present all the time, it was difficult to diagnose.

During 2007 and 2008, I started to experience more symptoms, such as difficulties with swallowing and slurred speech. In August 2009, I went back to Portugal on holiday and I started talking to Zenaida and I explained all of my symptoms to her. I was shocked when she said I might have myasthenia gravis. I started to cry, because I had painful memories of visiting her in hospital when she was very poorly.

When I came back to London, I went to my GP and I was referred to a neurologist. It was there that I was diagnosed with anti-MuSK positive myasthenia gravis and, at the time, I was the only patient in my hospital with that type of myasthenia. Unfortunately in 2015, I had my first crisis and I ended up in intensive care. I am currently doing plasma exchanges four times a year and my consultant is thinking of introducing a new drug called mycophenolate mofetil.

Zenaida has been a great help to me and we support each other by keeping in contact, talking through our medication, side effects, treatments and we also try to educate ourselves about myasthenia. We are also active in myaware's Young Generation Support Group.