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About 250 people die every year in the Czech Republic due to one of the worst known illnesses and it is newly diagnosed to approximately the same number of people. The total of 800 patients are living with amyotrophic lateral sclerosis (ALS) in the Czech Republic. ALS is a progressive neuromuscular disease effecting the nerve cells in human brain and spine. All musles in the body weaken and patients need help and assistance. In the Czech Republic, they get help from an association called ALSA, an organization connecting patients and professionals interested in amyotrhophic lateral sclerosis. Philips donated financial funds to the paliative team of ALSA, taking care of patients in their homes, to purchase a car including a ramp for wheelchairs. Up to now, the members of ALSA were using their own automobiles to visit their patients, and it was not possible to transfer a patient in a wheelchair or deliver medical devices from a rental facility run by ALSA.
There is no cure, ALS can only be slowed down
ALSA is significantly helping to improve the everyday life of patients with ALS and their families. A person with ALS first stops to have control of their arms and hands, starts walking with difficulty, at the later stages can only speak with difficulty and then stops controling breathing and swallowing muscles. There is no effective cure for ALS yet, but there are methods and equipment that can increase the quality of life for patients with ALS.
“I believe the car with serve its purpose well and that it will allow the members of ALSA to have some ease on their very difficult, but very helpful mission“, says Tomaž Justin, Philips Head of Health Systems for CEE Central. “We chose ALSA for longterm cooperation, because we want to help to improve the quality of life for patients with amyotrophic lateral sclerosis, which is unfortunatelly incurable and the care for patients with ALS is only at its beginnings“, adds Justin.
ALSA helps patients with ALS and their families in multiple ways. Its members provide consulting on how to manage the disease and its progression, how to obtain reimburesement for medicines, medical devices, they provide physiotherapy, organize reconditional stays for patients and their families, and the ALSA paliative team visits patients at their homes and provides necessary care.
Start of a long-term relationship
Philips started to support ALSA this year and the purchase of a new car is just the beginning of a long-term relationship.
“We are very happy to have received this gift, we needed a car and it will make life easier for us and our patients. Our team will use it when visiting our patients at their homes and we can use it to transport our clients from one place to another during our reconditional stays“, says Eva Baborová, director of the ALSA association.
The course and speed of progression of ALS differs from case to case. It is difficult to give a prognosis. In some patients it progresses very slowly, in others much faster. Current speed of development of new symptoms can suggest the progression, althought the speed of progression can change at any time. The averated time to live after being diagnosed with ALS is two to five years. According to data, 20% people with ALS lives longer that for five years, 10% more than 10 years and 5% for 20 and more years.