Patience and perseverance have been key in my journey with MG

(Photos courtesy of Alice Wangui Wambugu)

This is Alice Wangui Wambugu’s story:

My name is Alice Wangui Wambugu. I was born in Kenya on July 4, 1989. I grew up as a normal child and did not have a lot of major medical issues.

When I was in high school, I started having difficulties doing simple tasks like brushing my hair, especially in the morning. Before I could even figure out what was happening, I started having difficulty standing up from a crouched position.

Things continued to get worse, especially when it was very cold. When I fell down, I couldn’t even pick myself up. My hands were too weak to support me. This went on and only got worse.

It was so hard for me. I was around 15 years old and didn’t understand what was happening. I was slowly getting weaker, and there wasn’t an explanation for it. I had to leave school because my hands were too weak to write. My eyes were drooping, and sometimes they even refused to open.

Alice with her family.

I left school and went home. I stayed for five months before getting a diagnosis. During this time, my health really deteriorated. Now I was unable to shower on my own or feed myself. Lifting a spoon was very hard. At the end of 2006, I was diagnosed with myasthenia gravis. I was immediately put on medication and even went back to school.

I stayed on my medication, and but after a year, my condition became on and off. When under pressure, I’d become weak, and the cycle of falling down and having episodes of weakness that lasted more than a day would start, which made me stop going to university.

I started taking a high dose of prednisolone and Mestinon (pyridostigmine), and my condition became manageable.

Alice with her family.

In 2016, I got pregnant with my first child. It was so hard at first, but after the first trimester, it was smoother. However, when I had my baby, the baby had to go to the intensive care unit (ICU), and I had to go to the high-dependency unit.

When the baby was almost 1 year old, my health began deteriorating again. One day, I was rushed to the hospital because of shortness of breath. I ended up in the ICU, where I stayed for five days.

When I left the ICU, I was taking very high doses of prednisone, azathioprine, and Mestinon. It took me the whole of 2018 to stabilize my health again.

Now I only take 5 mg of prednisone twice a week and 225 mg of azathioprine a day.

In 2019, I got pregnant again with my second baby. I am currently managing well with just medication. I have never had surgery, as my body responds well to medication.

Since 2020, I have not had severe episodes. Very hot and very cold weather affect me, but not as much lately.

Living with myasthenia gravis has been the most challenging thing I’ve ever had to go through, but it has taught me a lot of patience and perseverance.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series.