Rashmi Rungta
Born in 1970 in Kolkata, a sprawling city in the east of India, Rashmi's family witnessed the very first symptoms of Myasthenia Gravos (MG) when she was just six months old. After a fall, she turned blue and eventually her eyes started to droop. She also started to get breathless during breastfeeds and was floppy. As these were unusual symptoms, it made Rashmi's parents very anxious. They started to seek several medical opinions and treatments, including homeopathy. The treatments helped slightly but the symptoms persisted. She was diagnosed with MG by the end of the year and additionally cretinism and hypothyroidism 2 years later.
When her eyes drooped, Rashmi would use her left hand to lift her right eye and play with her right hand, which resulted in a peripheral vision in her left eye, since it remained closed.
When she turned seven, Rashmi underwent a thymectomy at the UCLA (USA) hospital and at ten years, became a research patient in NIH Bethesda because it was unknown to have autoimmune acquired MG as a 6-month-old. She was treated by renowned neurologist Dr W K Engel.
Growing up with MG (Challenges and Successes) - in her own words
Living with MG has not been smooth sailing and I have had my fair share of ups and downs with the latter being more predominant. I have never known any normalcy but just either bad or 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 consultation with the US medics, however I kept having bad episodes from time to time.
Due to lack of societal awareness and understanding of such a condition, I faced multiple challenges as a child. 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.
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 the 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 and return 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 throughout the rest of my life.
I had a few relapses of MG and at one point, it resulted in a collar bone fracture from falling down the stairs. Crash diet to lose weight resulted in blood transfusion as well at the same time.
I persevered to put the challenges behind me and at the age of twenty-five, 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, Germany, and the USA.
I worked hard to convert 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 team and have built and led teams of over 50, for large MNCs such as Fujitsu Consulting, ITC Infotech, Siebel, Cap Gemini, Churchill, Deloitte. My clients have included FTSE 100 industry leading like BAT, Telia Sonera, IBM and so on.
I did face medical issues from time to time and sought treatment in the respective country. The only visible sign of my condition was my droopy eyes, but I learnt to ignore unwarranted stares or quizzes and the progress in my career helped. I moved cities within India as well and lived independently.
On a family trip to the US in 1996 and working in 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 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 5 minutes, comb my hair, wear clothes, climb or descend stairs etc. A neurologist started me on Mestinon every 4 to 5 hours, which helped immensely.
On my next upcoming trip to the USA, 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 the intensive care due to severe viral infection, high fever and difficulty in breathing and swallowing. With IVIG, I came out of intensive care. I was able to stop Mestinon and just take it on emergency basis eventually.
I decided to join London Business School on a prestigious master’s programme. and post my degree, 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, hence my bloods were tested at Oxford University. All the results came 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 industry leading clients Unilever, Harley Davidson, USAID and so on.
Being on immunosuppressant makes me vulnerable to infections and I have been admitted to the A&E thrice – 2 times due to viral infections (Norovirus and Rotavirus) and 1 due to a vertigo episode. I was shielding during the pandemic and have now taken 4 vaccinations, although not sure how protected I am.
Within 3 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 and want to contribute to the well-being of everyone who faces these challenges every day of their lives.
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 best extent possible!!
