The most Difficult battle of life is given by American actor Eric Dane .When).
“His recent diagnosis at the age of 52 reminds us that ALS does not discriminate. Can offend anyone, regardless of age, sex or reputation. Behind Hollywood lights, Eric is now a member of a silent but brave global community. Of a community whose most famous member was the theoretical physicist Steven Hawking who taught us a lot about the disease, “says Aspa Carabela, president of the Hellenic Association of People with HELLENIC ALS Association, an expert on patients with ALS at the European Medicines Agency (EMA) and a member of the EU EU EU.
Mrs. Carabella describes’relentless illness»Als and points out that she has no cure yet. But patients are not alone, he says. “We’re with them. All of us who believe in a society with care, inclusion and justice. We are next to people who lose their voice, movement, and even breathing daily – but they never lose their dignity, courage and faith. The Association of People with Motor Neuron’s diseases is a group of people who know the struggle with the disease closely. That is why it supports patients and carers throughout Greece, offers information and psychological support, and claims high quality rights and care for all sufferers, ”he says.
The club’s scientists report six basic data that we all need to know about ALS’s disease.
- Side Amyotrophic Sclerosis (ALS) is one evolving neurodegenerative disease. It affects the brain and spinal cord (nerve cells) of the brain and spinal cord, limiting muscle function and the ability to perform activities such as speech, swallowing, walking and breathing.
- Are relative rarely and universal lethal. In Europe, people living with it are estimated at 32,000. However, it is estimated that every 45 minutes a patient with ALS dies, so the annual number of its victims is estimated at about 10,000. The harsh reality is that prevalence remains low due to the high mortality rate. Around the world, patients are estimated to be 223,000 in 2015 and will reach 376,000 by 2040.
- Its cause is not known. Its development is believed to involve various genetic and environmental factors, as well as lifestyle factors. Studies have shown that the risk of developing is increased by certain genetic mutations located in two in three familiar (hereditary) sufferers and in one in ten with sporadic ALS (ie without a family history of the disease). The risk is also increased by some chemicals and biological agents (eg heavy metals, pesticides, solvents), brain or spinal cord injuries (especially when they are severe), certain occupations (eg work in the armed forces, professional football, construction).
- Does not begin to all sufferers in the same way. In 70-80% of cases the symptoms begin at the edges (hands, feet). At 20-25% it begins with poor speech joint and difficulty in chewing or swallowing, while the rest can affect respiratory, with the initial symptom of respiratory difficulty.
- As a rule it has rapid evolution. Although it can offend people of all ages, even 20 -year -olds, the average (median) age is between 51 and 66 years. Within about 18 months of the manifestation of symptoms, people living with ALS lose their independence until they reach situations of full paralysis. Up to 50% of patients develop cognitive deficiency (may be associated with frontal dementia) and experience changes in behavior and personality, such as emotional instability, impulsivity and loss of interest and motivation. But others keep their senses and mental skills intact to the end. Unfortunately, ALS significantly reduces the life expectancy of patients. Most of them end up within 2 to 5 years from the onset of symptoms. Only 10% survive 10 or more years. Half of patients lose their lives by respiratory failure.
- Sufferers face significant challenges. The extremely rapid progression of symptoms and their multidimensional manifestation make ALS a unique and extremely complex disease in its diagnosis and treatment. Despite an increase in awareness of rare diseases, people living with ALS in Europe continue to face significant challenges related to delays in providing precise diagnosis, underlying treatment options and lack of approved treatments. In fact It often becomes the wrong diagnosis at first For ALS, thereby usually spending more than 12 months until patients learn what they have. The lack of knowledge about ALS and the fear of its diagnosis are the two main causes of this delay. A delayed diagnosis means that the proper care and support will be initiated – and patients do not have the luxury of time. Equally important, however, is the fact that patients need intensive medical care, which their relatives are often called upon to provide, since in most countries there are no organized centers for providing the necessary multi -scientific care and hospitalization.
“Although the term ALS is widely recognized, it is not fully understood what it means to live with the disease. Delayed diagnosis, the complexity of the disease and the urgent need to immediately treat patient problems, which often increase on a daily basis, mean that sufferers and their families face a continuous and increasing number of challenges in a short, intensive period. This can pay them all, and they often feel helpless as there are no structures needed to support them, ”concludes Ms. Carabela.