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Multiple sclerosis is a disease that affects young non-disabled people who may suddenly lose their eyesight or stop walking. In addition, a patient diagnosed with MS waits up to a year for treatment to begin.
Multiple sclerosis – first symptoms
The first symptoms of multiple sclerosis usually appear suddenly between the ages of 20 and 40. This can be blurred or double vision, and sometimes loss of vision in one or both eyes. Sometimes there is weakness and paresis of the limbs, incoordination, numbness, and sensory disturbances. Sometimes there is also dizziness, balance disorders, slurred speech.
What is Multiple Sclerosis?
Multiple sclerosis results when the body’s own immune system begins to destroy the sheaths of nerve cells like acid, to the insulation of electrical wires. Without insulation, the nerves are exposed to short circuits and conduction blockage. Scars, or sclerosis, are formed at the site of damage to nerve fibers in the brain – hence the name of the disease – multiple sclerosis. In Poland, about 40 people suffer from MS. people. Almost one-third of people with multiple sclerosis are mild and remain fully functional even after 15 years. However, in a dozen or so percent of patients the disease is severe and after 3 years they are sentenced to a wheelchair. Treatment and rehabilitation can slow the progression of MS. Unfortunately, in Poland, due to the lack of appropriate treatment, the quality of life of patients is one of the worst in Europe.
Multiple sclerosis – Polish treatment
Although medicine has made great progress in the treatment of MS, Polish patients are not happy about it. 20 years ago, the first drug appeared to slow the progression of multiple sclerosis. Today, seven measures are registered that will hold it back for many years. Until recently, patients with MS, according to Polish regulations, could benefit from treatment for only 5 years, although specialists believe that it should be continued as long as possible. After patient protests, the Ministry of Health lifted the temporary limitation of treatment applied first, but did not contribute funds to finance longer therapy. As a result, the queue became longer. – There are centers where patients can wait over a year to start treatment – says prof. Krzysztof Selmaj, head of the Department and Clinic of Neurology, Medical University in Łódź. Agata Byszewska, secretary of the Neuropozytywni Foundation, which brings together people suffering from neurodegenerative diseases, adds that, for example, at the University Clinical Hospital in Wrocław, 300 days are waiting for treatment.
Patients need medication
The Neuropozytywni Foundation and the Urszula Jaworska Foundation, which overcame leukemia thanks to the first in Poland bone marrow transplant from an unrelated donor, were involved in the struggle for access to treatment at the European level. Her daughter Ola Baranowska was diagnosed with multiple sclerosis when she was 25 years old. She was just entering her adult life, she was in the process of applying for a home loan. Ola received treatment immediately. He lives a normal life, works full-time, studies at weekends. He emphasizes that after such a diagnosis one can break down, but it is even more difficult when the patient has to wait for treatment or lives in fear that the therapy will not be financed.
Izabela Czarnecka, president of the Neuropozytywni Foundation, fell ill with MS when she was 29 years old. The disease first hit her eye. She started seeing badly. Then there were hearing problems, balance disorders, and hand tremors. Today he is in a wheelchair. Her Foundation has been fighting for easier access to treatment for years.
Multiple Sclerosis – Drugs
Drugs used in the first stage of treatment of multiple sclerosis help only 35 percent. sick. Six new, more effective preparations are registered in the European Union for the treatment of patients who no longer respond to basic treatment. Only two of them are reimbursed in Poland. The patient who has to take them is also waiting in the queue, but the biggest problem is qualification for therapy. In studies, specialists and manufacturers of these drugs have proved that patients should be treated with it after the first exacerbation of the disease. – Meanwhile, despite the effects of many years of clinical trials, a small body at the table in the Polish Ministry of Health decided that the therapy can only be started after the second exacerbation – outraged prof. Selmaj. – And the delay may result in a faster deterioration of the patient’s fitness – he adds. Moreover, according to Polish regulations, these drugs can be used for no longer than 5 years. The cost of a monthly treatment reaches PLN 8. zloty. – This is the patient’s drama – emphasizes Urszula Jaworska, who announces that she will fight for better access to drugs and neurological rehabilitation for patients with MS.