The aim of the campaign is to show that spinal muscular atrophy - a severe genetic disease, until recently described as fatal - is today becoming chronic.
This is possible thanks to an effective treatment that has been available in Poland for three years in the drug programme 'Treatment of Spinal Muscular Atrophy'. The therapy is available to all SMA patients, regardless of age or stage of the disease, whose ambassadors will share their story for the campaign - they will talk about what has changed in their lives over the past three years and how the treatment effects are presenting themselves. Parents of children with SMA will talk about how successful the treatment has been for their loved ones who have received therapy in the pre-symptomatic stage, as well as after the onset of symptoms. Does the therapy give them a chance for a normal life? Is it possible to have plans and dreams for the future with SMA today, and what is the quality of life for patients and their carers. The campaign materials will be supplemented with contributions from clinicians, who will talk about the disease and treatment, referring to scientific reports and their own observations in the treatment of SMA over several years. All materials will be available on the Facebook profile of the "Stream of Life in SMA" campaign. https://www.facebook.com/strumienzyciawsma (#strumienzyciawSMA).
Stream of life in SMA - the organiser of the nationwide educational campaign is the SMA Foundation. The campaign kicked off on the 1st of August - a month to build awareness of SMA. During this period, on the Facebook profile of the campaign, the organisers will present stories of SMA patients told by themselves or by their family members. Each story told is a touching account of their fight against the 'muscle strength thief', as spinal muscular atrophy is termed, and the strength they gain, thanks to the treatment available. In their stories, we will find out what effects they are seeing from the treatment they are receiving in themselves or their loved ones, and how the treatment is affecting their quality of life and the realisation of plans and dreams previously unattainable. The campaign profile will be complemented by expert materials and the latest scientific reports on the effectiveness and safety of treatment.
In the campaign we will see how life with SMA has changed over the last 3 years, we will hear about dreams realised, plans for the future, because there is no shortage of these already. We will hear parents share the joy they get from looking at their children and witnessing a miracle. The ambassadors of the campaign, are the protagonists of interviews, films made for this education - they include: Angelika Chrapkiewicz-Gądek, Agata Spała, Agata Roczniak, Michał Woroch, Oliwka Rabczuk, Emilia Raczek together with her mother Dorota Raczek, president of the SMA Foundation, Natalka Woźniak, Katarzyna Pedrycz - vice-president of the SMA Foundation, Bartłomiej and Dominik Bakalarz and many others. Different people, different types of SMA, different stories, but a common path to the stream of life, which is not only treatment, but the will to live life to the full.
- My illness progressed very slowly but steadily forward. There were no sudden drops in form, I just got weaker and weaker every year. At the beginning, it was difficult for me to lift myself off the ground, but later I could only do this with assistance. After that, I couldn't walk on my own, only with support. I had to wear knee braces to prevent me from falling. When I started using a wheelchair, I was still able to get down from it, until finally the day came when I could no longer get up from it. I have been taking nusinersen since 2020. The first four doses were a moment of some positive shock for my body. For example, I was able to lift something off the ground that I had not been able to do for years. Lifting a kilo was completely impossible before, and now it is no longer a problem. In order to reach for something, I had to do it with supporting movement, and now I do it without such support," says Agata Spała, one of the ambassadors of the 'Stream of Life in SMA' campaign. - For me it is important that I can still work more. Without nusinersen I wouldn't be able to cope with all the new ideas and projects. It used to be that children - like me - would get a diagnosis and parents, like my mother, would only get one piece of information: "You must rehabilitate your child, because there is no cure for this, nor is there any way to cure this disease, to stop it completely - you can only slow it down". Now nusinersen is a chance for kids to develop normally from the very beginning," she adds.
Source: medexpress.co.uk