Seven minutes in stroke - Dipes Mandel, Founder President Stroke Foundation of Bengal

We would like to congratulate Dipes Mandal for winning an individual achievement award for his work with the Stroke Association of Bengal.

What inspires you to advocate for stroke education? 

The helpless and hapless condition  of millions of stroke afflicted  people, most of whom could have been prevented is the most important factor which ignited me to work  in  the most easy way to save them from physical and economic devastation.  As India,  with a population of about  1.3billion with an annual stroke  incidence being about  2 million, the most important way to save them is stroke prevention through Stroke Awareness and Stroke Education, which was not properly  looked into till few years back. This is more important where the infrastructure for stroke care service is very insufficient, more so in rural areas, where two thirds of Indians  reside.

What does stroke care look like in your country?

Stroke care service is most neglected among the leading devastating disorders in India and needs immediate attention of all  stake holders. India  is a vast country with people of many faiths and cultural divides. The divide between the urban and rural is also big. Health care facilities are not equally available to all. Ideal stroke care is available only in a few big cities – in few  tertiary centres and only shows the the tip of the ice berg in stroke care service for those who can afford care in private hospitals.  In India   about 2million people are afflicted annually of which over 6 lakh die and many more are disabled after immediate crisis. Stroke is on the rise in developing countries where lifestyle diseases are becoming an epidemic  due rapid urbanization and fast life. However stroke occurs equally in  the rural areas where food types,  salt intake, tobacco addictions  (smoking and chewing) add to the undiagnosed hypertension and diabetes.  >85% strokes occur in developing countries like India which lack infrastructure and finances to tackle the malady. In India the alarming fact is that stroke strikes people about 15  years earlier than  those in the Western world. This means it affects the people in the most productive years of life. If the main bread winner, usually  the male here, is affected the family suffers enormously. In eastern India, there is high incidence  of hemorrhagic stroke in contrast to the western world. In our place, it has been observed that  people in the 40s and 50s have high incidence of hemorrhagic strokes. Uncontrolled/undiagnosed high blood pressure ( hypertension) is the commonest cause of all strokes especially hemorrhagic strokes. Proper data is lacking in India. What is a fact is that >70% people live in rural India and lack uniformity and accessibility to even basic health care facilities. The cost of stroke management is quite high in terms of acute management and also in subsequent  post stroke follow-up. there is no dedicated Stroke Institute existing in West Bengal which may  cater all aspects of management to a large number of stroke patients and stroke-prone individuals – Rural &  Urban, the  Rich and the Poor irrespective of age, gender, race, religion and region.

  

What element of stroke care are you most proud of?

That stroke is by and large preventable in > 85% cases has  to be ingrained in all stroke care facilities and programs. In India most people stop their blood pressure medications and chew tobacco or smoke.  With  our continuous campaign we have been able to make people realize ill effects of these addiction on the high incidence of stroke and heart attack. The importance of  proper rehabilitation and  required medication have been established among most of the cases and the caregivers. Moreover, there has been rapid awareness about recognition of stroke and  its early hospital management.

What have been the highs so far?

Very rapid spread of Awareness among the general public   about the  term “Stroke” which means Brain Attack , and not Heart Attack through intensive  uninterrupted stroke awareness  is  a very important development in Stroke  Awareness  and its management. People now realize the  importance of acute stroke management in a stroke centre. Importance of rehabilitation is also gaining grounds, even in rural areas.

             Stroke Foundation of Bengal (SFB), the only non-profit registered organization in India and a member of World Stroke Organization (WSO) is committed to fight stroke malady in our country with minimal resources and aids, in the guidelines adopted by World Stroke Organization. As stroke is very much a preventable disease and is better prevented (esp. By controlling high blood pressure and stopping tobacco addiction) than treated,  our Stroke Foundation started its stroke prevention campaign since its inception in 2006. Before  the inception of stroke Foundation, the different programs on stroke awareness was started  in the Mdedical College, Kolkata since 2000. Along with awareness,  a study was  conducted in 2003, to assess the level of awareness of stroke among the general people, which revealed about 65% of participant considered Stroke as  Heart attack. Following awareness programs, there are significant rise in stroke information   in all section of the society.

The standard conventional modalities of stroke education  include  seminars, meetings, leaflets distribution, articles in papers, magazines,  Bulletins, Stroke Documentary (with English subtitles) souvenir, etc., and also the  publication of quarterly stroke bulletin in both Bengali and English. The more recent modalities include regularly updated website (www.strokefoundationbengal.org),  Facebook etc.  We have received enough helps from print and electronic media in stroke awareness campaign .Stroke Foundation is also taking  care of rehabilitation program of the post-stroke disabled patients and also has formed Stroke Support Group (the second in India) for overall benefits of the stroke victims and their family members. The introduction of Stroke  awareness  about its risk factors and  future predictability  through smartphone  by installing Stroke Riskometer app  is the latest and most innovative tool  in  stroke care.  All these  works are moving slowly but steadily, and that is really very high  in  a vast country with so much population with significant lack of awareness.

The activities of the Stroke Foundation are appreciated by the leaders of the World Stroke Organization (which was also established in 2006) and as a recognition of its stroke campaign activities,  the Stroke Foundation of Bengal has won First Honorable Mention  in the WSO World Stroke Day 2010 & 2012 awards. SFB has included people from all walks of life in its campaign – a very positive aspect.

What have been the lows?

It is the apathy of the many people, due to lack of stroke awareness - both general and professional- which has hampered development of stroke care in India. The priority of Stroke care is much less than Tuberculosis, AIDS and Malaria, although stroke kills more people than all the other three do together, not to talk of post stroke devastating disability.   Even among  the NCDs , stroke gets minimum attention in public health program. There is no government grants forthcoming smoothly. There is no nationalized health insurance, there is no government initiated rehabilitation facilities. prevention clinics which are of utmost importance in developing countries.  Government  institutions offering comprehensive stroke care are few in number and unavailable to the vast expanse of population. Of concern is the apathy of the professional bodies and medical fraternity itself towards prevention and rehabilitation of stroke care. SFB for that matter has taken the leadership in the  single handed campaign with  minimal help whatsoever, and the results are promising.

What is your greatest hope for stroke survivors?

There is always a ray of hope for stroke survivors. SFB has so far successfully spread stroke education to most areas of eastern India and will continue its crusade.  It has received great support from the international stroke leaders and WSO. I am sure with such encouragement and appropriate support , it is possible  to achieve  the targeted goal of  holistic  affordable stroke care in approachable places. By the influence of media and other modalities in  program,  a  section of people, mostly young educated and rich have  taken much interests in this stroke devastation and extending all possible help to the stroke survivors.  The government   has  also shown some interests in stroke care centres, although it will take some time to implement because of huge stroke burden and paucity of funds.

What were the major elements of your stroke campaign?

Stroke Foundation started its stroke prevention campaign since its inception in 2006. The modalities adopted for the campaign are seminars, meetings, leaflets distribution, articles in papers, magazines, Stroke Documentary (with English subtitles) souvenir, etc., publication of quarterly stroke bulletin in both Bengali and English and also regularly updated website (www.strokefoundationbengal.org) and facebook.  The activities of Stroke Support Group (the second in India) for overall benefits of the stroke victims and their family members are quite encouraging.  Recently the Stroke Foundation has been able to convince the  persons  in the Government and administration  to set  up a  stroke care service centre  in a remote underdeveloped district with necessary financial help.  The supports of the public, media and the government are the major elements of the present stroke campaign

Seven minutes in stroke with Dr. Nneka Ifejika

1. What inspired you towards neuroscience?

The concept of cortical reorganization. I likened it to learning the world is round after centuries of believing the world is flat.

2. Why stroke?
Family history. My maternal grandfather died of a likely ICH during my mother's first year of medical school.
My mother had a right PCOMM aneurysm coiling during my fourth year of medical school, and a clipping during my second year as an attending physician.
My family isn't alone, there's a critical need to stop the cycle of stroke.

3. What have been the highs so far?
Being included as a part of the family by stroke survivors.
It is an honor that has enriched my life and given me an intimate perspective on cultural dynamics, food preferences and customs among different ethnic groups.

4. What have been the lows?
Having a research idea that is a little premature.
Sometimes you have a concept that is cutting edge, but the technology hasn't caught up to accomplish the protocol.

5. What do you believe is unique about your work?
The combination of social, cultural and behavioral aspects of healthcare with mobile information technology.
We use apps for everything, from banking to social networking. Why not use it for healthcare?

6. Who are your most important mentors and how did you find them?
Dr. James C Grotta - as a resident, I cared for the rehabilitation unit patients on weekends to earn supplemental income.
Dr. Grotta, at that time the newly appointed Chairman of Neurology, noticed that I worked a disproportionate amount of weekends compared to my colleagues (medical licenses can be quite expensive)!

Within a few months, he hired me as the junior Neurorehabilitation faculty member. When I took an interest in stroke outcomes, he encouraged me to complete the 2 year UTHealth Clinical Research Curriculum, providing the foundation for my first NIH award.

I meet with Dr. Grotta every two to three weeks.  We talk about a variety of topics - he has worked in the Native American Health Service, volunteered during the American Civil Rights Movement and held NIH funding for decades.  He has taught me to have breadth and depth to my life experience.
To expect the unexpected.
To face adversity with grace and dignity.
And sometimes, to ask for forgiveness, not for permission, when going after something you believe in.


Dr. Jon E Tyson - He is the Director of the Center for Clinical Research & Evidence-Based Medicine at UTHealth.
I conceived the idea for Swipe out Stroke as a student in his Advanced Clinical Trial Design class.
 He is my mentor for the Masters' of Science in Clinical Research program and my institutional career development award.
Dr. Tyson is tough, yet kind and immensely supportive.
He inspires me to work smarter, utilize creative interventions and to take time to give back and mentor others.

Dr. Sean I Savitz - Dr. Savitz is an elegant example of an academician.
He's evenly keeled, brilliant and perceptive. Dr. Savitz's mind works in a stream of consciousness - he can see the structure of a manuscript from a single PowerPoint presentation.
We speak several times a week - I grab either my "Sean" notepad or my Smartphone to rigorously scribble ideas.
He's a mentor that is a wonderful example of where I want to be.

7. What are your most important collaborations and how have you built
them?
Dr. Elizabeth Noser has been my clinical partner since recruiting me to join the UTHealth Stroke Team. She is the Director of  Community Outreach, which is a key component of my work serving minority populations.  We sponsor the annual UTHealth Stomp out Stroke event, which provides free health screenings, stroke education and entertainment to thousands of Houstonians.

Dr. David E Rivers at the Medical University of South Carolina chairs the National Conference on Health Disparities.  The annual symposium has provided a platform for my work, and I joined the Advisory Board in 2015.  This year I'll give the Keynote Speech to the undergraduate and graduate students on "Successes (and failures) in Conducting Clinical Research".

As a member of the inaugural class of the American Academy of Physical Medicine and Rehabilitation (AAPM&R) Leadership Program, I received two years of training in health advocacy, strategic planning and  media skills, which has helped me spread the message of caring for underserved populations using mobile applications.
I presently serve on the AAPM&R's Health Policy and Legislation Committee, taking our message of health equity to members of the United States Congress.
As a Washingtonian, it's an honor to come home, and hopefully effect change.