Feb 6, 2020
Nenad Nikolić, Stroke Association Serbia’s Secretary
Author: Nenad Nikolić, Stroke Association Serbia’s Secretary and Stroke Survivor’s #BrainLifeGoals project manager
During the Brain awareness week, held 11- 17th March 2019, all around the world, many of actions and campaigns took place, aiming to raise public awareness of the progress and benefits of brain research. It was a chance to inform people about the progress in diagnosing, preventing and treating brain disorders. Our Stroke Association Serbia is involved in European and World stroke campaigns, so we used the opportunity to inform our followers about it, using social media and our website.
It was around that time that the European Federation of Neurological Associations launched #BrainLifeGoals campaign. The goal of this campaign is to show and explore aspirations and desires of people who live with brain disorders. Hashtag #Lifegoals has become a popular trend among social media users, clustering their shares about goals and achievements. Sometimes those goals were to have some clothes designed by a famous fashion designer, to earn a lot of money, to travel to exotic destinations, drive a new car… For a person with a brain disorder, these are not important goals- this is luxury, because these people strive for some „basic“ things such as being able to walk again, to read, to write, to talk etc. Things on a daily basis that most of us do automatically and easily can be an achievement and a life goal for someone with brain disorders. We can call them #BrainLifeGoals.
Our Association recognized the importance of this particular campaign because we could easily relate to it. We decided to support it with active participation. Since I have been managing our Association’s Facebook and Twitter page, and have a very active communication with our followers, I was privileged to receive many people’s stories about their personal experience with stroke.
We decided to publish stories of people with stroke, with an emphasis on their #BrainLifeGoals during their recovery. Than we asked and encouraged those people, most of being in their twenties and early thirties, to share their stories publicly, and to raise awareness of all the problems they’re facing, but also to encourage others with stroke and give them strength to continue their daily struggle with stroke consequences.
No matter how hard we try to advocate for stroke, no one can do it better than someone who has experienced it.
Preparing these stories was a bit of challenge, because there is a lot to be said, and I needed to prioritize. I felt a lot of responsibility, because I was writing about someone’s life, and it had to be done the right way and without many medical terms in order to make understandable for broader audience. The facts and events they told us were shaping stories. Each story was different and had its own concept. All these stories contain variety of emotions: Fear, anxiety, uncertainty, but also hope and huge amount of willpower and support. These stories carry strong messages. Almost every storyteller’s life has changed drastically and these people have now completely different views on life and its aspects, many of them have new hobbies, new healthy habits, many changed their nutrition habits to healthy diets, many of them became more stress tolerant… Highlighting these changes felt like a very important thing to do.
Predrag M. – A middle school physics teacher, a father and a stroke survivor whose #BrainLifeGoal was to be able to read again.
Their #BrainLifeGoals vary from person to person. For someone it was babysitting and playing with their children, for someone cycling, reading, walking without help to nearby sightseeing… Eight stories have been published so far, and some of storytellers had a stroke at the age of 18 and 19! Several more stories are in preparation and will be published soon. Some of our story tellers- Stroke Survivors, had a stroke in their sleep, some while on work. It is clear that stroke can happen anytime, anywhere, to anyone. All these stories have a strong empathetic potential and when read, the reader is faced with situations and problems that the survivors are facing every day. If these stories are encouraging people to think that way, it is our victory! We modified our website www.mozdaniudar.org so every single published story is on one page that can be easily accessed with only one click www.mozdaniudar.org/wp/brainlifegoals/
Except for the important messages stroke survivors tell, it is very important to underline that they also talk openly about stroke. This is, once again, very important, because these wonderful people are encouraging others with stroke to talk freely about their problems, and prevent stigmatization of stroke patients.
The usual procedure is that we first share story on our website and social media accounts, than we translate it to English, and later EFNA shares them on their site www.efna.net/brainlifegoals/ . This way, stories of stroke survivors reach larger international audience. Other Internet portals sometimes share our stories, and we are happy about it. We started with a story of a mother of three who suffered a stroke at 40. Her basic motivation and #BrainLifeGoal was to play again with her children. We continued Campaign with a story of young nursery teacher who had a stroke, and after she recovered, she won a medal in downhill cycling! This inspiring story shows that not only recovery is possible, but also excellent results can be achieved.
Marina K. – A Downhill Biking Champion, a mother and a stroke survivor
In all our cover stories focus is on a stroke survivor, which is very important. For me personally, participating and managing Campaign #BrainLifeGoals in Serbia is a big pleasure, and I really enjoy working on this. I am very proud that our participating in this campaign with working title “Stroke survivor’s brain life goals” is rewarded by EFNA with a grant that really meant a lot to our organisation and helped us organize our core activities.
We are all excited because we feel that we are doing a right thing, helping to raise public awareness about stroke and difficulties that stroke survivors are experiencing in their life after stroke. In a way, we became a “PATIENT VOICE” which is one of our SSO’s basic purposes, and a slogan of the Stroke Alliance for Europe whose member we are proud to be – “The Stroke Patient Voice in Europe”.
Image credits: All images used in this article are property of the Stroke Association Serbia.
Feb 4, 2020
Professor Valeria Caso, Associate Professor of Neurology, University of Perugia Stroke Unit, Perugia, Italy, Professor Helmut Pürerfellner, Department of Cardiology, Public Hospital Elisabethinen, Linz, Austria and Professor Georgios Tsivgoulis, Associate Professor of Neurology, Second Department of Neurology, National & Kapodistrian University of Athens, Greece discussed the different types of stroke and how it is a major healthcare issue. They also discussed the value of prolonged monitoring in selected ESUS patients, and also some new data that might reconfirm what we already know – that if we have longer monitoring in some of those patients, then we will have even better outcomes.
- New evidence and increasing the awareness of atrial fibrillation (AF) in cryptogenic stroke patients.
- Treatment approaches from the guidelines and the latest study evidence.
- AF, stroke, and related symptoms, and why the evidence from the past is important.
- Why ESUS needs prolonged monitoring and how new data may benefit patients.
For accessing the webinar video, please click on the button below:
For further information please visit Oruen website.
This webinar was supported by Medtronic.
Jan 31, 2020
First published on ScenceDaily.com
New research from the Smidt Heart Institute at Cedars-Sinai showed for the first time that women’s blood vessels — including both large and small arteries — age at a faster rate than men’s. The findings, published Wednesday in the journal JAMA Cardiology, could help to explain why women tend to develop different types of cardiovascular disease and with different timing than men.
“Many of us in medicine have long believed that women simply ‘catch up’ to men in terms of their cardiovascular risk,” said Susan Cheng, MD, MPH, MMSc, senior author of the study and director of Public Health Research at the Smidt Heart Institute. “Our research not only confirms that women have different biology and physiology than their male counterparts, but also illustrates why it is that women may be more susceptible to developing certain types of cardiovascular disease and at different points in life.”
Using community-based data amassed from multiple sites across the country, Cheng and her research team conducted sex-specific analyses of measured blood pressure — a critical indicator of cardiovascular risk. The data represented nearly 145,000 blood pressure measurements, collected serially over a 43-year period, from 32,833 study participants ranging in age from 5 to 98 years old.
Because a person’s risk for developing a heart attack, heart failure, or a stroke typically begins with having high blood pressure, Cedars-Sinai researchers combed through their massive data looking for clues and patterns regarding how blood pressure starts to rise. Then, instead of comparing the data from men and women to each other, investigators compared women to women and men to men.
This approach allowed investigators to identify that the progression and evolution of women’s vascular function is very different than for men. In fact, women showed signs of blood pressure elevation much earlier in life than men.
“Our data showed that rates of accelerating blood pressure elevation were significantly higher in women than men, starting earlier in life,” said Cheng, the Erika J. Glazer Chair in Women’s Cardiovascular Health, who also serves as director of Cardiovascular Population Sciences at the Barbra Streisand Women’s Heart Center. “This means that if we define the hypertension threshold the exact same way, a 30-year old woman with high blood pressure is probably at higher risk for cardiovascular disease than a man with high blood pressure at the same age.”
Christine Albert, MD, MPH, founding chair of the newly established Department of Cardiology at the Smidt Heart Institute, says this new research should help guide clinicians and researchers to think differently when it comes to treating and studying women and their cardiovascular health.
You can read the full article here.
Jan 24, 2020
First published on ScienceDaily.com
It’s been almost a quarter century since the first drug was approved for stroke. But what’s even more striking is that only a single drug remains approved today.
In a publication appearing this month in the journal Translational Stroke Research, animal scientists, funded by the National Institutes of Health, present brain-imaging data for a new stroke treatment that supported full recovery in swine, modeled with the same pattern of neurodegeneration as seen in humans with severe stroke.
“It was eye opening and unexpected that you would see such a benefit after having had such a severe stroke,” said Steven Stice, Georgia Research Alliance Eminent Scholar and D.W. Brooks Distinguished Professor in the University of Georgia’s College of Agricultural and Environmental Sciences. “Perhaps the most formidable discovery was that one could recover and do so well after the exosome treatment.”
Stice and his colleagues at UGA’s Regenerative Bioscience Center report the first observational evidence during a midline shift — when the brain is being pushed to one side — to suggest that a minimally invasive and non-operative exosome treatment can now influence the repair and damage that follow a severe stroke.
Exosomes are considered to be powerful mediators of long-distance cell-to-cell communication that can change the behavior of tumor and neighboring cells. The results of the study echo findings from other recent RBC studies using the same licensed exosome technology.
Many patients who suffer stroke exhibit a shift of the brain past its center line — the valley between the left and right part of the brain. Lesions or tumors will induce pressure or inflammation in the brain, causing what typically appears as a straight line to shift.
“Based on results of the exosome treatment in swine, it doesn’t look like lesion volume or the effects of a midline shift matter nearly as much as one would think,” said Franklin West, associate professor of animal and dairy science in the UGA College of Agricultural and Environmental Sciences. “This suggests that, even in some extremely severe cases caused by stroke, you’re still going to recover just as well.”
You can read the full article here.
Jan 24, 2020
First published on EFNA website – Event announcement and invitation
On 18 February 2020, EFNA together with EBC and EAN, will hold the event “Brain Health as a Global Priority – Time for the EU to Act Now” in the European Parliament, Brussels from 11am to 1pm in Room 6Q1, hosted by Jarosław Duda, EPP.
Follow this link to register via EFNA website.
The event is held under the patronage of Members of the European Parliament [EP]:
- Ewa Kopacz, Vice President of the EP, European People’s Party [EPP]
- Mairead McGuinness, Vice President of the EP, European People’s Party [EPP]
- Miriam Dalli, Vice-Chair, Group of the Progressive Alliance of Socialists and Democrats [S&D]
- Frédérique Ries, Vice-Chair, Renew Europe [RE]
- Kateřina Konečná, European United Left–Nordic Green Left [GUE/NGL]
- Tilly Metz, Group of the Greens/European Free Alliance [EFA]
The event looks to explore the following:
Is brain health a global priority?
In the Political Declaration on Non-Communicable Diseases (NCDs), which arose from the United Nations (UN) High-Level Meeting on NCDs in 2018, all Governments recognized that ‘mental disorders and other mental health conditions, as well as neurological disorders, contribute to the global burden of NCDs. It resulted in adding mental and neurological health as the ‘5th NCD’, complementing global efforts to combat cancer, CVD, diabetes and chronic respiratory diseases. This has been reinforced in the recent 2019 UN Declaration on the Universal Health Coverage, where ‘mental disorders and other mental health conditions as well as neurological disorders’ have been identified as an ‘essential component of UHC’. Additionally, the World Health Organisation (WHO) is also now building a new Brain Health team to operate from its headquarters in Geneva. The question now is how can we ensure this progress can be translated into policy action at EU and member state level?
You can access more information and agenda by following this link.