PEOPLE WE ADMIRE

Year : 2022  |  Volume : 3  |  Issue : 2  |  Page : 204-206

Broken strings can still make a symphony

Puneet Dhar
Department of Surgical Gastroenterology, All India Institute of Medical Sciences, Rishikesh, Uttarakhand, India

Correspondence Address:
Dr. Puneet Dhar
Department of Surgical Gastroenterology, All India Institute of Medical Sciences, Rishikesh - 249 203, Uttarakhand
India

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/JME.JME_94_22

1. When did you come to know about your MS and what were your initial reactions to the prognosis as you understood it?


There was a sense of disbelief. I knew vaguely about MS. When I was in the 5^th grade, my school invited a lady with MS to speak to us about the disease. I remember her being in a wheelchair and wearing braces around the torso to help prop herself up because she was starting to have trouble staying upright. Over the years I would read a bit more about MS here and there, just whatever I heard in the news or read about in articles. I did not know much, and the first thing I recalled when I was told of my diagnosis was that lady in the wheelchair. I could not imagine myself being like her. It was quite difficult, emotionally.


2. What steps did you take to educate and protect yourself?


I have a brilliant neurologist here, in the US where I live. He is also of Indian origin and his story is a lot like mine. He came to America for a university education and stayed on to become what he has. At my first appointment with him, the one where he offered me my diagnosis after looking at my magnetic resonance images (MRIs), he spent over an hour with me answering all my questions. He was very compassionate, but he never lied to me. He told me about the worst things that could happen, but he also told me how mild it could possibly end up being for me. He offered me a literally giant bag of educational material regarding the disease and modifying therapies that I could choose from. When I came home, I could not help Googling MS, and so I learnt a lot doing that as well. I made sure I started a treatment right away, doing what I could to slow down disease progression. I have also, over the years, found various strengthening exercises that I do regularly.


3. Why did you decide to help others and how do you help others?


It took me some years to get to the point where I wanted to help others. I found that I had to take the time to help myself first. The 1^st years were very hard, and I found myself losing hope a lot. There was a lot of self-pity and crying. I had a wonderful fiancé, and now husband, who never lost faith in me. I think knowing I could have children, something I wanted very much, helped to give me hope. After the births of both my children, I found more to look forward to, and more reasons to be strong. My family are the reason I try to help others.

I found ways to volunteer. I provide volunteer support to the Texas Children's Hospital in Houston as part of their Patient and Family Advisory team. I work with parents and patients of the Texas Children's Hospital to provide insight and opinions on current hospital projects, with the hope of bettering patient and family experiences. I also present my story as an ambassador for the National MS Society in Houston, to encourage Houston-based companies and people to participate in the Texas MS 150 that is held yearly in the spring.


4. What is MS 150 and why is it important to you?


The Texas MS 150 is a yearly bike ride that raises funds for finding a cure for MS. All proceeds go to the National MS Society, which supports research for a cure, as well as providing resources for MS patients and their families. It is the largest effort for fundraising for MS where I live, and I have over the years made many personal connections with the people who participate. My husband and I have attended the ride over the years, with my husband riding twice and my family volunteering a few times over the years. It is a huge event, and a great place to meet others like myself. I have even had the pleasure of taking my parents to see this event. I think it helped them to see that I was not alone in this.


5. Hearing from you, do you feel it is easier for people who are affected, and others, to deal with and understand MS better?


This is a difficult question for me. I am grateful that for now, I have what I like to call a 'good MS'. I am active, and I have no limitations on what I can do physically. Apart from chronic fatigue and sometimes pain, I do not very frequently experience the more disabling symptoms of MS. This also makes me cognizant of how lucky I am when I meet people with MS who are not so lucky. There is a level of 'survivors' guilt' that I sometimes experience when this happens. I do not look outwardly affected by MS in any way (I am not visibly disabled). Because of this, it is hard for me to think about how I can help others with MS. However, I hope I can educate people who are newly diagnosed, and also offer the general public more information on the disease. I also understand the uncertainly that comes with MS, so that is something I frequently share.


6. How did your background, the Foreign Service, diverse exposure help?


I had a beautiful childhood, but I was also made quite resilient by it. I also have a congenital heart defect, the Tetralogy of Fallot, that I was treated for as an infant and that I get routine checkups for. I was already very familiar with navigating various medical establishments and with advocating for myself as a patient. For many people, especially women with MS symptoms, it takes years before they find the right doctor who will do the right tests to give them the right answers. I learnt to be pushy, and to stand up for myself.

Even meeting that lady with MS in the 5^th grade – that was when we lived in Australia. Australia has a high rate of MS diagnoses, so I think it made sense that we were educated on the disease as children. I learnt a lot growing up in different countries and picked up what my mother likes to call 'golden nuggets of information'!


7. What issues do you think you would have faced if you were in India?


I think I would have had a very different life if I had stayed in India. I am very lucky in my husband and his family – they are American, and they do not see my purpose in their family as being anything other than a daughter and friend. I have heard accounts of women in India, rich and poor, being treated poorly by in laws because of the toll MS has taken on them. I think this is likely true for diseases that are more common in women. There is a whole lot of thinking about women as 'damaged goods' when something like this happens. The sad part is that MS is usually diagnosed when people are in their 20's and 30's, so by then a person is somewhat settled down in life or beginning to embark on starting their life, and then bam! MS happens.


8. What is the general prognosis of people with MS, in India?


I do not pretend to know a lot about what people with MS in India face, but from the few people I have known about who share my diagnosis – it is hard to get acceptance, diagnosis, and treatment of this disease, no matter what your financial status. I know about well-off people who come to the United States for their treatment and pay out of pocket for drugs that cost tens of thousands of dollars a year. I am also sure that there are poor people who have MS who will simply never get the diagnostic procedures they need (lumbar punctures, brain and cervical MRIs, etc.) to even know what is wrong with them. This disparity exists for all diseases in India. Sometimes, you find amazing pockets of philanthropy, such as the hospitals set up by Dr. Devi Shetty, that provide care to all classes of people. I hope something like that for MS and other neurological illnesses can happen in India. Maybe someone reading this will feel the calling to start a national neurological institute!


9. How do you think we should organise patient advocacy in India?


I think India is absolutely wonderful in the kinds of public health campaigns that are possible. Neurological illnesses have increased in India in the past decade. If the government could be lobbied about this phenomenon, and education be given to people about the signs, symptoms and treatments for these illnesses, that would be amazing. I also think it is wise to encourage people to get yearly medical checkups where they are free to ask questions and be given information on diseases that can affect their age group. I would personally want to advocate for yearly checkups for disadvantaged people, as well.

MS support groups such as the National MS Society here in the United States really helped me. More advertisement by the MS Society of India could be another way to gather a cohort of patients, and to allow for more research, dialogue, and advocacy.

https://www.mssocietyindia.org


10. Why is it important to raise awareness about MS the world over?


MS is the most common immune-mediated disorder affecting the central nervous system. It is important for people to know that this disease exists and that there is a race to find a cure, because it is highly possible that every single person on this planet will end up knowing about at least one person who has MS. Someone reading this could end up being a person who is diagnosed.

Thank you Janika, and we sincerely hope that you continue to have only 'good' MS and your good-ness and courage affects others in many ways to make their lives more bearable. MS is being recognised as being much more common in India than was recognised earlier! We need formal studies of the epidemiology but it may be present in upto 8–10 per 100,000 population. The worldwide prevalence is about 2.5 million – the majority being diagnosed as young women. Not just physicians and neurologists, we need more efforts in individual and group advocacy. Challenges and the evolving landscape of MS in India have been highlighted in many recent reviews.^[2]

I am personally sorry that I didn't have the opportunity to have Janika as a professional colleague as her desire to do surgery was doused in her early teens when she fainted watching an operation by a relative!

References

1.	Available from: https://www.controleng.com/articles/2021-engineering -leader-under-40-janika-tyagi-36/. [Last accessed on 2022 Aug 12].
2.	Kumar S, Rohatgi A, Chaudhari H, Thakor P. Evolving landscape of multiple sclerosis in India: Challenges in the management. Ann Indian Acad Neurol 2018;21:107-15.   [PUBMED]  [Full text]