WSO President highlights role of mobile technologies in stroke prevention

 Global Summit on Circulatory Health, Paris, August 2019

The 4^th Global Summit on Circulatory Health, held in Paris this week, brought together stakeholders from around the world to focus on Innovations in Circulatory Care and Technologies. Hosted by the World Heart Federation on behalf of partners in the Global Coalition for Circulatory Health, the conference explored the role, potential and challenges of harnessing established and emerging technology to address the leading cause of death and disability globally.

In a session on the Implications of Digital Health for Health Systems, WSO President Michael Brainin, highlighted the evidence that supports the use of mobile technologies within an overall prevention strategy that encompasses policy, community interventions and pharmacological innovation.  

Interventions such as the WSO endorsed Stroke Riskometer, he said, had opened a new chapter for stroke prevention, putting the tools for change in the hands of huge numbers of people and thereby offering unprecedented potential to achieve substantive reductions in stroke incidence. Prof Brainin referenced the WSO endorsed Stroke Riskometer, which delivers evidence based individual risk assessment, paired with motivational and behaviour change via mobile phone. The Riskometer is a prime example of a digital tool that ‘allows us to make advances on prevention for low and medium risk populations in ways that have not been possible before.’ 

Kavita Basi shares her inspiring story of stroke recovery

In March 2015 at the age of  38, Kavita Basi suffered a subarachnoid brain haemorrhage, a life-threatening type of stroke caused by bleeding on the surface of the brain. Here Kavita shares her story to continue to raise awareness of stroke. 

I was taken into the accident and emergency wing of the hospital on 17 March, 2015, with a life-threatening subarachnoid haemorrhage. I was only thirty-eight years old and had always been a healthy person. I was successful, career-oriented, and travelled the world while working too many hours with no time to relax and think. Then, one night, I suddenly became extremely ill, and my whole world fell apart. I was in the hospital for nearly two months, and after four intense brain surgeries, I had difficulty understanding what was happening to me and why.

What expectations did you have for your treatment, rehabilitation and recovery?

I didn’t understand what had happened to me therefore I was not in the right frame of mind to be able to have any expectations , also considering that this had never happened to me before it was all a new experience. However I was given very basic detail on how my recovery would progress and didn’t find this helpful.

What was your experience of treatment and/or rehabilitation?

My journey to recovery has been challenging, my perspective has drastically changed, as I now see the important things in life I had to relearn how to do the simplest tasks, like climbing stairs, re-tuning noises due to losing some sense of hearing, severe constant headaches as a result of watching any TV, leaning how to use my mobile devices without having motion sickness. My personality changed, and I was left with short term memory loss, intense mood swings, an emotional state of mind, being very direct when talking, having the black and white thinking and losing that middle ground of understanding. This new life also had a major effect on my relationships, family, and view of work.

What has helped you in your recovery?

• Starting my own blog and youtube channel
• Writing a diary to get my emotions out and help with memory loss
• Tools on mobile device like notes and sharing calendars have helped with memory loss
• Therapy at the priory – with confidence and understanding
• Neuropsychology – which I still attend helped with other tools to adapt to give me a more normal life
• Neuropsychology for my family – this has helped my relationships as they now understand
• Talking to others – by joining health unlocked forum
• Walking – daily to help my high anxiety and keep my focus and fitness
• Diet – eating healthier to keep my fitness
• Not going to loud places – it hurts my head and ears when I’m tired.

What have been/are your fears?

That it will happen again

How did your family and friends feel and respond?

Its been very difficult for my family to understand this just as much as me and maybe even more difficult for them as they have not experienced the daily challenges. By making some of them go to talks from charities or neuropsychology with me has really helped them to understand better. 

My social circle has changed as a result of lack of understanding.

How and why have you got involved in stroke awareness and advocacy?

I have got involved since I came out of hospital because I felt so alone in my early days of recovery and didn’t want anyone else to feel the same which is why I started to get so involved in helping others. So I started my blog, website www.kavitabasi.com and then I wrote my book Room 23 Surviving a Brain Haemorrhage.

Seven minutes in stroke - Dr Li Xiaofeng

In the coming weeks we will online publish the article Granulocyte Colony-Stimulating Factor and Stromal Cell-Derived Factor-1 Combination Therapy: A More Effective Treatment for Cerebral Ischemic Stroke the subitting author Dr Li Xiaofeng has answered our Seven Minutes in Stroke. 

1. What inspired you towards neuroscience? 

Neuroscience is the final frontier of the human body, and many mysteries remain to be revealed. Most importantly, there are many intractable neurological diseases, such as AD, PD and stroke, that still need to be further investigated to elucidate the mechanims and develop new therapeutic strategies. 

2. Why stroke? Among those intractable neurological diseases, stroke is currently the first cause of death in Chinese residents. Currently, one person has a new stroke every 12 seconds, and one person dies of a stroke every 21 seconds. My grandfather died of ICH, so I chose neurology as my profession after graduating from college, and I hope I can devote myself  and make my contributions in stroke research and clinical treatment.

3. What have been the highs so far? Our research team will be very excited when our animal experiments have made significant progress. The conclusion of our study are useful for guiding clinicians in clinical practice. Although the results cannot be used directly in the clinic, the can allow clinicians to keep thinking and be prudent in their treatment, which is a good thing for patients.

4. What have been the lows? The data obtained from our current study in animas cannot be immediately applied in clinical practice. The safety and side effects of drug combinations in our study are unknown, and further preclinical studies and clinical trials are needed for translation.

5. How do you balance work life with the needs of home life? I have always regarded the work of neurology as an interest rather than just a career, doing a good job at work time, taking care of my family during the rest time, and taking neuroscience research as an interest if there is extra rest time.

6. Who are your most important mentors and how did you find them?

Professor Mei YuanWu, Department of Neurology, Union Hospital of Huazhong University of Science and Technology, was my doctoral tutor. As of this year, Professor Mei has been working in neurology for 50 years. I met him at a domestic stroke meeting. I studied at Union Hospital for three years.

7. What are your most important collaborations and how have you built them? In 2005, our neurology department established a cooperative relationship with the Department of Neurology of Tiantan Hospital. Professor Wang Yongjun of Tiantan Hospital has been a visiting professor of our hospital. I met Professor Wang in 2002 and studied in Tiantan Hospital for half a year. Professor Wang is the first scholar to promote the Stroke Unit in China. I respect Professor Wang and his achievements in the field of stroke prevention in China.

Li Xiaofeng

Chief physician

Department of Neurology,The People's Hospital of Guangxi Zhuang Autonomous Region,  China.        

                 

Ghana stroke support organisation is honoured and motivated by World Stroke Campaign Award 2018

Stroke Association Support Network Ghana (SASNET Ghana) share their thoughts on being selected as the winner of the World Stroke Campaign Award 2018 in the Low-Middle Income Country category. 

SASNET Ghana has been involved in organising World Stroke Day events since our establishment in 2012. SASNET Ghana's year round work is focused on raising awareness of stroke and supporting people living with stroke to improve their quality of life though our outreach program, Community Stroke/NCDs Awareness and the Community Life After Stroke Program (CLASP). 

The 29th October every year is a special day in the calendar for SASNET Ghana and we use World Stroke Day to:

1. Remind Ghanaians that stroke is a global health burden and the incidence of stroke is increasing in Africa

2. Take the opportunity to involve the media in issues relating to stroke and so raise the profile of stroke across the country 

3. Engage a range of health professionals to contribute in raising awareness at their respective hospitals, clinics and health centers across the country

4. Challenge the myths ,superstitions and other beliefs around stroke and to provide full and accurate stroke information

World Stroke Day events over the years continue to give SASNET Ghana the opportunity to involve academics, researchers and government officials in our work and their inputs and research are an invaluable resource for our activities.

SASNET Ghana's World Stroke Campaign Award 2018 in the Low-Middle Income Country category is an honour. The award is motivation for all members of SASNET Ghana. This gives us the reason to go the extra mile, especially as we are determined to use an innovative approach to educate and to disseminate stroke information in Ghana. The award must also be attributed to the work of the Ministry of Health, the Ghana Health Service and members of the Health Committee in Parliament, all of which have supported our work. 

The Ghanaian Government is developing strategies to achieve the targets of Sustainable Development Goal 3, Good Health and Well Being and SASNET Ghana will use this opportunity to gain support from the Government to launch The National Act F.A.S.T Campaign.

Our special thanks goes to: Rev.Dr. Immanuel Alpha-Christ, Chief Dr.Ben S.Jabuni and the entire SASNET Ghana Campaign team led by Faustina Larbi, Stroke Health Promotion Manager, all the stroke survivor members, the stroke multidisciplinary team, Korle Bu Teaching Hospital, Military Hospital, Komfo Anokye Teaching Hospital, Ridge Hospital, Trust Hospital and last but not least, Ad Adams Ebenezer ,the Executive Director for Stroke Support Operations at SASNET Ghana.

Seven Minutes in Stroke - Benjamn T. King

Dr Benjamin King from  the Department of Neurology, Dell Medical School and the University of Texas submitting author of the manuscript 'Optimal Delay Time to Initiate Anticoagulation after Ischemic Stroke in Atrial Fibrillation (START): methodology of a pragmatic, response-adaptive, prospective randomized clinical trial.' published in the International Journal of Stroke. 

1.      What inspired you towards neuroscience?

Unsurprisingly, I came to the field of neuro-epidemiology in a roundabout way, but the neurosciences were always a focus. My undergraduate program at Bard College provided the opportunity to partner with a team building a zebrafish neuroscience lab from the ground up. I was thrilled by my time studying the mechanism of addiction in this model, but I was also determined to move on to human subjects research. From there I went to work at inpatient psychiatric care facilities for a while, but never left the mind/brain question behind.

2. Why stroke?
As we all know, stroke results in a massive amount of disability and death. Public health training recognizes the benefits of addressing the largest drivers of disease burden such as this. Moving the needle even slightly in the prevention, care, or recovery from stroke can lead to inflated population health benefits. I was developing and managing research in emergency medicine when our first acute ischemic stroke trial came along.  It didn’t take long before that became our focus.

I'm lucky to really love the work I do

3.      What have been the highs so far?

I’m lucky to really love the work I do. There is something special that happens when a completely new research question gets introduced – usually when one of my clinician partners kicks down my door out of the blue – and we get to start solving a design question from scratch. There is also a great feeling when you get to see the work you do as an epidemiologist lead to changes in service delivery.  Add to that any and every time I get to take a crack at a clean dataset …and there are too many highs to count.

4. What have been the lows?
Peer-reviewed rejections of grant proposals never seem to get easier.  I’m proud of our wins, but I’m still learning to shake off the losses.

5. How do you balance work life with the needs of home life?
My wife and I both work long hours. She has a background in social work, from before her law career, and does a good job of reminding both of us about the importance of self-care. Setting aside time for ourselves is key. It requires hard work at both ends of the spectrum.

6. Who are your most important mentors and how did you find them?
Dr. Truman Milling hired me to build the Emergency Medicine research program in Austin and we have been working and writing together ever since. It is a truly rare thing to find a clinician with his gift for writing and the technical aspects of research design. When Dr. Steven Warach relocated to Austin from his position as the head of intramural research at NINDS our team leapt at the chance to manage his research program. I have been benefiting from his leadership ever since.  His perspective and insights have literally helped to shape the modern era of vascular neurology practice.

Finally, my epidemiologic training was mentored by some of the greatest methodologists in both epidemiology and biostatistics. My doctoral advisor, Dr. Steven Kelder, has shown me over and over that the field of epidemiology can be used to enact real, systemic changes by studying and testing solutions to complex problems. I first met Dr. Kelder during the master’s program, when I walked into his office unannounced and asked for a job… over a decade before asking him to be my advisor.

7. What are your most important collaborations and how have you built them?

As an epidemiologist I get to work in and around a lot of different specialties. One of my favorite endeavors is the collaboration built to connect our work in the tertiary care setting with housing and homelessness service agencies in our local community. In fact, my dissertation was a deep dive into the psychometric and validation testing of a popular vulnerability score measure used for housing resource prioritization. Honorable mentions go to our collaborators in the Lone Star Stroke Consortium, my partners in the Dell Medical School’s Department of Population Health and the Division of Psychology.

World Stroke Campaign award a testament to life after stroke

Michael Uchunor, founder of the stroke support organisation Michael and Francisca Foundation in Nigeria, wins the 'Award for Individual Achievement' in recognition of his work in support of the World Stroke Day campaign 2018. 

I was 33 years old when I had my stroke in 2012. I used to drink a lot of alcohol and smoke cigarettes. I think I may have been hypertensive before the stroke occurred but I have no way of knowing since I had never checked my blood pressure before then.

I now want to identify stroke survivors so that we can advocate together for better stroke awareness and care for stroke survivors in Nigeria. Stroke advocacy and campaigning are important in order to educate the public about the symptoms of stroke and the importance of getting to the hospital quickly. It also raises awareness on profound and universal impact of stroke on individuals and families so that decision makers understand the importance of resourcing quality education, treatment and long term care and support for stroke survivors and care givers.

Stroke support organisations like Michael and Francisca Foundation still have to focus on grassroots outreach to raise awareness as many people in Nigeria do not have access to media campaigns. This outreach also gives us greater understanding of the lived experience of stroke that we can share with decision makers.

I get involved in World Stroke Day on 29^th October every year to underscore the serious nature and high rates of stroke, to raise awareness of the prevention and treatment of the condition and ensure better care for survivors.

When I had my stroke, there was nothing like a stroke support group near me that I could access, but I know that my recovery would have been easier if I had been connected with such a group. A group where I could meet other stroke survivors with similar effects; get to know and communicate with one another, share stories, challenges and inspiration, learn about promising treatment and new research. This gap gave birth to the Michael and Francisca Foundation which is a place where stroke survivors and their relatives connect with one another. We now have 128 members and still counting.

Receiving the Award for Individual Achievement from the World Stroke Campaign is testament to me and other stroke survivors that there can be life after stroke. I am thankful for my faith and to my family and friends who stood by me. This is just the beginning of my stroke campaigning in Nigeria.

New WSO stroke support organisation member prioritises stroke prevention in New Zealand

Stroke Central Region is a not-for-profit, member-based organisation that provides support services for stroke survivors and their families in the central region of New Zealand, including a stroke community and field officers that guide those affected by stroke through the journey to recovery.

2019 has been a busy year for Stroke Central Region. With the number of stroke patients rising, our field officers have been getting more than twice as many stroke referrals than in 2016. In New Zealand, around 9,000 people suffer a stroke each year and that number is expected to increase by 40 percent by 2028. Due to this expected increase, our focus for 2020 will include primary stroke prevention. Helping us to put an infrastructure in place for this is Professor Valery Feigin.

Professor Feigin has recently been appointed Honorary Clinical Director to our Board of Governors which is a big milestone for Stroke Central. He is the director of the National Institute for Stroke and Applied Neurosciences at Auckland University of Technology (AUT). He is also an executive committee member of the World Stroke Organisation (WSO), and a World Health Organisation expert on stroke. He is currently the most cited scientist in New Zealand with more than 650 publications, including 340 scientific articles. He will be a major asset to our stroke community and we are looking forward to working with him.

Another big milestone for our organisation in 2019 will be the coordination of the World Stroke Day Campaign for New Zealand on the 29^th October. We feel very honoured to lead the campaign for WSO within our country and are currently liaising with other likeminded companies to partner with for this special day. Part of this campaign for New Zealand will be the promotion of the Stroke Riskometer App, developed by Professor Valery Feigin together with AUT. The App tells users their risk of stroke within the next 5-10 years and how they are able to lower their stroke risk.

Stroke Central staff

Looking forward to 2020, apart from focusing on stroke prevention, our Stroke Awareness Week will take place in April and is another big opportunity for us to raise the awareness of stroke, and coordinate our big fundraising campaign for the year. This is a big opportunity for all our members and volunteers to help, within their communities, to spread their knowledge on stroke, share information and help with raising funds for our charity.

October 2019 News

Stroke Central Region's #DontBeTheOneNZ Stroke Prevention Campaign was successfully launched on 29th October 2019 with the help of Auckland University of Technology (AUT) and the World Stroke Organisation. To learn more about the year long campaign, the Stroke Riskometer App and how to prevent stroke, watch the full launch video or visit the #DontBeTheOneNZ website https://www.strokecentral.org.nz/dont-be-the-one/ 

For more information visit: https://www.strokecentral.org.nz/

Seven Minutes in Stroke - Dr James Siegler

Dr James Siegler is the submitting author for the paper ‘CT perfusion in stroke mimics’ to the International Journal of Stroke which has been published online and allocated to the April edition of the journal for 2020. 

We asked Dr Siegler to tell us a little bit about himself in our Seven Minutes in Stroke professional series.

1. What inspired you towards neuroscience?

In high school, I was drawn to biology. At the time, my whole family began to seriously address the dementia symptoms of my great grandmother (who lived to be 106!), and I had wondered why this was. How could such a presumably healthy and active woman spend the remaining few years of her life in a memory fog? In college, my interest in neuroscience solidified as my questions were answered--and yet, even more questions emerged. So began my lifelong quest to understand the brain and the mind.

2. Why stroke?

In medical school, the most accomplished and supportive neurology mentor I could find was a stroke specialist. Dr. Sheryl Martin-Schild who was a recent addition to the Tulane faculty and soon after her appointment as the Stroke Director she led the team to swift approval as a Comprehensive Stroke Center. I initially found stroke interesting on a research level (only later came to enjoy it clinically). At the time, we were exploring the effects of combination antiplatelet therapy for secondary stroke prevention, extending the window for intravenous thrombolysis, and investigating unique tools for endovascular thrombectomy. It would be an understatement to say that stroke was witnessing a revolution in diagnosis and treatment.

3. What have been the highs so far?

Since my initial foray into stroke, as everyone knows, we are closing PFOs, expanding our knowledge of how to manage strokes due to unknown mechanisms, optimizing antiplatelet therapy for secondary stroke prevention, and we can now safely and effectively treat large vessel occlusions up to 24 hours after onset. With the exception of development of the head CT or the testing of alteplase, I can't think of any better "highs" in stroke research or clinical practice.

As far as my personal highs, I have been honored to participate in a number of these pivotal stroke trials (POINT, DEFUSE-3, NAVIGATE-ESUS, ARCADIA) and collaborate with some of these investigators in my own research. Learning from them has been instrumental to my career as a junior researcher.

4. What have been the lows?

Nothing out of the ordinary to say here; difficulties with a rigorous internship, challenges inherent to inflexible mentors. However, some of these are vital to our personal growth and they are informative of our roles as medical educators and leaders.

5. How do you balance work life with the needs of home life?

My wife and I have been fortunate enough to have recently given birth to our first daughter, Sofia, on June 29. My wife, Erika, has been BEYOND phenomenal in caring for our baby girl, and has always supported my academic interests. As a junior clinician, I can't say I've figured it out just yet. But from my early days as a Hopkins undergraduate, where I double majored in neuroscience and history of medicine, worked every semester in some sort of research lab, and still made time to find employment to pay for my room and board, I was forced into a life of efficiency and pragmatism. Taking these things with me through medical school and residency, and building on them, has helped me balance home life with work requirements and academic productivity.

‘If there is ever a choice to be made between life and work, 9 times out of 10 I will choose life.’

6. Who are your most important mentors and how did you find them?

Without a doubt the most instrumental mentor in my early career was Dr. Sheryl Martin-Schild. She took me on as a research assistant as a first-year medical student, where I worked with 3 other medical students developing a local stroke registry at Tulane University School of Medicine. Four years later, our team had grown to nearly 30 students and neurology residents, and we had published more than 20 original research papers. 

I have to admit that none of my grades or test scores have ever attracted anyone's attention. I've always considered myself a hard worker, but somehow I could never get past some sort of ceiling created by multiple choice tests. Clinical research provided me with an opportunity to cultivate new skills, and I am so grateful for every mentor who has helped me along the way. No doubt because of our productivity at Tulane, I was able to match at the Hospital of the University of Pennsylvania and collaborate with internationally renown stroke researchers like Scott Kasner, Steve Messe, and Brett Cucchiara, as well as junior faculty Mike Mullen and Chris Favilla. Not to mention the unparalleled research support team of our stroke division!

7. What are your most important collaborations and how have you built them?

While I have been lucky to collaborate with many clinicians, scientists, statisticians, and other researchers, I believe my most important contribution to neurology and my most important collaborations have involved online medical education. As a senior neurology resident at the Hospital of the University of Pennsylvania, and an avid cyclist (spending hours and hours on my bike listening to a variety of music and podcasts) I thought it would be more useful to spend that time listening to clinical content. The state of podcasting in neurology back in 2015 was far less developed than podcasting in other medical disciplines (e.g., emergency medicine and internal medicine). I wanted to create something better.

So I recruited some amazing teachers and friends in neurology to help me produce my own neurology podcast, BrainWaves. Michael Rubenstein, Ali Hamedani, and my wife Erika Mejia, have all been HUGE collaborators and supporters in this regard. Without their help, we would not have been able to produce more than 170 episodes of this podcast with more than 300,000+ downloads. By the summer of 2019, we have collaborated with more than 70 unique clinicians and scientists across the US and internationally to generate this impressive body of work that targets trainees in neurology and medicine.

How have I built these collaborations? I ask nicely. :-) A carrot works better than a stick. It also helps to say "Your episode will be listened to by more than 2,000 people." For better or worse, I find this far more impactful than the majority of my research publications...