Myaware board member Rashmi Rungta gives an insight into her life with myasthenia gravis – a rare long-term condition that causes muscle weakness.

Myasthenia Gravis - A personal Journey

Born in 1970 in Kolkata, a sprawling city in the east of India, my family witnessed the very first symptoms of myasthenia gravis (MG) when I was just six months old. After a fall, I turned blue and eventually my eyes started to droop. I also started to get breathless during breastfeeds and was floppy. As these were unusual symptoms, it made my parents very anxious. They started to seek several medical opinions and treatments, including homeopathy.

The treatments helped slightly but the symptoms persisted. I was diagnosed with MG by the end of the year and additionally cretinism and hypothyroidism two years later. As necessity is the mother of invention, when my eyes drooped, I would use my left hand to lift my right eye and play with my right hand, which resulted in peripheral vision only in my left eye, since it remained closed. When I turned seven, I underwent a thymectomy at the UCLA hospital in the US and at 10 years, became a research patient in NIH Bethesda as it was unknown to have autoimmune-acquired MG as a six-month-old. I was treated by renowned neurologist Dr W K Engel.

Growing up with MG

Living with MG has not been smooth sailing and I have had my fair share of trials and tribulations. I have never known any normalcy, just “manageable” or “bad to worse”. My condition did improve after thymectomy and being treated at NIH. Steroids caused a lot of weight gain and excessive hair on my body. My condition was managed in India via general doctors in some consultation with the US medics, however, periodically I had bad episodes.

Due to lack of societal awareness and understanding of such a condition, I faced multiple challenges. At school, I was often bullied and excluded from joining in with other girls at play time. I was subjected to nasty pranks at an early age, which left me feeling vulnerable and lacking in confidence. As the youngest sibling of two much older brothers, I grew up in a protected environment. All the factors combined made me into a shy and socially awkward adolescent, especially due to my droopy eyes. Because MG is such an invisible and unpredictable condition, my family struggled as well in my upbringing. If I fell ill or lost consciousness due to fits, then my family panicked. I grew up in an era and country where mental health awareness was totally absent and any form of disability was a curse.

Despite the odds, I aspired to become an engineer from a young age, to follow in the footsteps of my father and brothers. I decided to take a leap of faith and went to a university away from home, but due to my condition and lack of support and public awareness, I struggled to adjust. I decided to drop out after trying for two years and returned home. The adverse impact of my condition was not only on my physical and mental wellbeing but cemented a misconception at home that I was incompetent. This was going to have lasting impact on my self-esteem.

A new chapter

I had a few relapses of MG and, at one point, it resulted in a collar bone fracture from falling down the stairs. Crash diets to lose weight resulted in blood transfusions. I persevered to put the challenges behind me and, at the age of 25, I embarked on a new chapter with my first corporate job offer in my hand.

I started to focus on my career and soon enjoyed the successes. My career took me to different parts of the world – UK, Europe, and the US. I worked hard to transform my weaknesses into strengths and equipped myself with the right tools to further my career and take on new challenges. I have been on the senior management teams and have built and led teams of over 50, for large multi-national corporations, such as Fujitsu Consulting, ITC Infotech and Deloitte. My clients have included FTSE100 industry leaders Telia Sonera and IBM.

I did face medical issues from time to time and sought treatment in the respective country I was living in at the time. The only visible sign of my condition was my droopy eyes, but I learnt to ignore unwarranted stares and answered the questions honestly and the progress in my career helped. I moved cities within India as well and started living independently. On a family trip to the US in 1996 and while working in the UK in 1998, I went back to Dr Engel, whereby he prescribed me prednisolone and Vit B12. While I was in Germany from 1999 to 2001, I was the subject of research at the Max Planck Institute, where I was prescribed pyridostigmine and azathioprine, although I did not start the medications due to a difficult personal situation. In 2008 during my late thirties, my condition started flaring up again and an anti-allergic medication aggravated it further. As a result, I was unable to hold my hands up, walk and talk for more than five minutes, comb my hair, wear clothes, climb or descend stairs. A neurologist started me on Mestinon every four to five hours, which helped immensely.

On my next upcoming trip to the US, I went back to Dr Engel in the University of Southern California in early 2009. After extensive examination, I was prescribed azathioprine with steroids, but I refused to take any steroids after having experienced severe side effects as a child. I continued to take Mestinon for temporary relief of my muscle weaknesses. Back in India, the Indian neurologist increased the dosage of azathioprine, which landed me in intensive care due to severe viral infection, high fever and difficulty in breathing and swallowing. With IV immunoglobulin, I came out of intensive care. I was able to stop Mestinon and just
take it on an emergency basis eventually.

Ready for challenges

In 2011, I decided to join London Business School on a Master’s programme and decided to make London my permanent home. I am currently under the care of a specialist neurologist. As she was not convinced about my acquired MG at such a young age of 6 months, my bloods were tested at the University of Oxford. All the results came back negative for congenital MG and she confirmed that it is indeed acquired. Professionally, I worked at Deloitte Consulting and then became responsible as Country Head for an overseas SME. I have engaged with the likes of industryleading clients Unilever, Harley Davidson, USAID and so on. Being on immunosuppressants makes me vulnerable to infections and I have been admitted to the A&E due to viral infections (norovirus and rotavirus) and
once due to an episode of vertigo. I was shielding during the pandemic and have now taken four vaccinations, although not sure how protected I am. Within three years of being in London, I joined Myaware, a charity supporting people with myasthenia, as a member. It has been extremely helpful to meet and learn from others living with the same condition and contribute as well. I am now also a Trustee of this organisation, with an aim to contribute and support everyone who experiences similar or even tougher challenges owing to MG.

I am a Trustee of two charities, including Myaware, and a governor of two schools as well. I am always ready for new challenges and have always believed that where there is a will, there is a way. I have not let MG conquer me but rather conquered MG to the greatest extent possible.