Many people can hardly imagine what it means to live with spasticity. Backed by Merz, a European awareness campaign aims to counter this information deficit. The Global Marketing Neurotoxins department presented this pan-European campaign to employees in Frankfurt.
To create more awareness for brain disorders, the European Federation of Neurological Associations (EFNA) launched the awareness campaign “Together Under the Umbrella”.
This event, which took place on December 14 in the company restaurant in Frankfurt, gave employees the opportunity to demonstrate their solidarity with the affected patients by having their picture taken, alone or together, under a Merz umbrella. Approximately 80 employees hoisted the umbrella, and the first photos have already been shared on social media like the campaign’s Facebook page and Twitter account under #UnderTheUmbrella to raise awareness for brain disorders.
In addition to the photo event, employees were also given the opportunity to learn about spasticity. “Sadly, spasticity is not as well-known to the public or general practitioners as it should be,” said Claudia Cramer, Senior Global Brand Director Xeomin. And the disorder isn’t even rare: In Germany alone, about 270,000 patients suffer a stroke per year, which often leads to spasticity. Worldwide, approximately 12 million people are afflicted by spasticity.
Many spasticity patients are untreated
“Spasticity isn’t a disease per se, but a symptom of a disorder of the central nervous system,” Dr. Hans Erich Diede, Lead Medical Expert Xeomin, explained. In addition to strokes, head, spinal, and brain injuries and multiple sclerosis are also triggers.
With spasticity, the course of the disorder often varies widely: Some patients develop spasticity immediately after a stroke, while some start exhibiting symptoms a year later. This is the reason why many spasticity patients are untreated.
Diede stated that the most important goal of therapy is to “restore the motor skills lost due to spasticity to almost normal levels”. Unfortunately, however, few patients fully regain the physical condition they had before a stroke. And those who succeed in walking independently again, as well as dressing and caring for themselves, can count themselves lucky, according to Diede.
“Treatment with botulinum neurotoxin is recommended by medical associations as a first resort measure,” he continued. But studies have shown that some patients wait up to several years before receiving a botulinum neurotoxin treatment. “As no one case of spasticity is like any other, it’s crucial for each patient to receive an individual therapy plan.”
Manuela Messmer-Wullen, chair of a European patient organization for stroke patients, described vividly what it means to survive a stroke and to deal with the consequences. More than ten years ago, a stroke suddenly made her active working life impossible. She spent six weeks in the intensive care unit and was lucky to survive at all. Next came a rehabilitation phase of approximately six months that was characterized by several setbacks. As a stroke patient, she suffered not only severe physical pain but also psychologically: Speech difficulties, problems concentrating, extreme noise sensitivity, and depressive episodes finally resulted in her having to give up her career.
Shortfalls in the treatment and rehabilitation of stroke patients
However, thanks to her own irrepressible ambition and the care and support of her family, Ms. Messmer-Wullen was able to adapt to her new life. Now, she is active as the chair of the Austrian self-help organization for stroke patients and uses her personal experience to shed light on the condition and its treatment options. “Unfortunately, the treatment and rehabilitation of stroke patients still have considerable shortfalls,” she said. “Patients are deprived of important treatments, because their condition is assessed as either too good or too poor.”
Finally, Donna Walsh, General Manager of EFNA, explained the background of the “Together Under the Umbrella” campaign to the attendees. The goal of the campaign is to illuminate the variety of neurological brain disorders in society and to increase people’s awareness of the impact and prevalence of the diseases. An overview of the previous #UnderTheUmbrella events illustrates the campaign’s success, which was continued with the Merz event. Ms. Walsh thanked the attendees for their active participation and Merz for its support.
You can see the complete set of photos taken on the day at the link below: