There are approximately 3,500 people with multiple sclerosis in Slovenia. Their treatment is not comprehensive enough, especially restorative rehabilitation is lacking, assesses the president of the Multiple Sclerosis Association of Slovenia, Pavel Kranjc.
A neurologist Alenka Horvat Ledinek said in a statement to the media that there are approximately 3,500 people with multiple sclerosis in Slovenia and that their number is increasing, which she attributes to the progress of diagnostic methods.
He notes that over the past three decades, drugs have appeared that significantly slow down the disease process, and last year there was a resounding research that indicated that would certain vaccinations can reduce the risk to her and others autoimmune diseases. As a summary, yes are looking for various biological markers of the disease, which will help neurologists in the future in the early diagnosis and recognition of the response to the treatment of an advanced disease.
At the same time, he regrets that Slovenia is one of the few European countries without a register of patients with multiple sclerosis. However, she praised the fact that it is among the European countries that have all the drugs available to slow down the disease process, but this is not enough. Patients need holistic treatment of the teamfrom a neurologist, specialized nurses, physiotherapists, occupational therapists and neuropsychologists, the neurologist listed.
Patients suffering from the disease have different needs in its various stages, and the profession wants patients to be active and integrated in society for as long as possible, as this significantly contributes to their self-image, independence and quality of life, stated Horvat Ledinek.
President of the Multiple Sclerosis Association of Slovenia Pavel Kranjc agreed with the assessment that the treatment of patients is not comprehensive enough, since treatment is covered by regulations, but restorative rehabilitation, for example, is not enough. For this year, they still do not have a contract for carrying out restorative rehabilitation, which is especially pressing, because the summer months are not the most favorable times for the sick due to the heat. They wanted to regulate this systematically by law in the longer term, but without success. According to him, the same applies to palliative care at home, which is regulated in some other European countries.
Concerned about the Long-Term Care Act
The long-term care law also causes them concern in the association. Namely, they advocate the introduction of a universal disability allowance, which would replaced the current Aid and Service Allowance and Disability Allowance. Anyone who uses personal assistance, would was obliged to give part of these funds to pay for personal assistance services and for smaller daily allowances would had the means available to reward the one who helps him, suggested Kranjc.
Kranjc, who was diagnosed with multiple sclerosis at the age of 27, emphasized that the first stage of the disease is the most difficult for the patient, when he has to accept the disease and answer the question of what he will be able to do in life and what he will not be able to do.
“Trust the doctor, because the doctor gives you good advice. I wasn’t a fan of any alternatives that turned out to be unsuccessful,” said the president of the association, which he said connects multiple sclerosis sufferers, regardless of their level of disability from the disease, and gives members the opportunity to share their problems with peers.