Doctors, patients and parents of children with epilepsy presented at a round table - discussion the situation with the lack of funding for the treatment of a resistant form of epilepsy, the absence of adequate social services, day care centers, policies aimed at supporting caring families for children and people with epilepsy, access to education and employment.
“Bulgaria does not have a clear and consistent policy in the diagnosis and treatment of children and adults with resistant epilepsy, social policy, policy in education and employment. According to approximate data, we currently have about 10,000 patients with this diagnosis," said Veska Sabeva, president of the Association of Parents of Children with Epilepsy.
“Regardless of the fact that most of the known and used medicines used in the world for epilepsy are registered in our country, doctors and patients are faced with a paradox - in recent years, classic drugs that have been widely used for decades and are cheap have been disappearing. Bulgaria continues to be the only country in Europe where the ketogenic diet for epilepsy has not been introduced and is not applied in an organized manner - a tried and tested diet known to generations of doctors.
We cannot overcome another paradox - not a single medical device is paid for epilepsy surgery for people over the age of 18", Prof. Dr. Veneta Bozhinova from the hospital "St.. Naum", national consultant in pediatric neurology, head of the Clinic for Nervous Diseases in Children.
You have been "connected" with epilepsy for a long time. Has there been a change in morbidity in our country in recent years?
- That's right, I relate to the epilepsies that start at the age of 4-5, continue through childhood and adolescence, and finally these children grow up. So I've always felt that getting the diagnosis right is essential. According to epidemiological studies, the incidence is from 1 to 5%, these are the newly discovered cases - 70 per 100,000 people. It is an unchanged fact that the disease is more common in children - the peak incidence is in early childhood. The next peak frequency is around 20 years, followed by late age - over 60 years. By age 1, the incidence is about 150 per 100,000, but by age 16, 60% of all epilepsies occur.
And although we now emphasize resistant epilepsies, we should know that there are epilepsies that create no less a crisis situation for families who have such a child, with his diagnosis and regular treatment.
What conditions is the disease usually associated with?
- Epilepsy is a brain malformation, often combined with motor deficits, cerebral palsy. Very often they have a mental deficiency, as well as psychopathology, which deepens over time. It is no accident that in the distant past there was a concept of "epileptic personality change", which still exists in psychiatric nomenclature.
The quality of life of these patients is greatly reduced,
anxious, they are depressed. Parents, those who take care of epileptics, also fall into these conditions. Therefore, our entire society must be committed to improving the quality of life of patients and their families.
How many children in our country suffer from epilepsy?
- There is no exact data because probably a part of them are not diagnosed. The total number of patients with epilepsy who use medicines from the He alth Fund is about 23,000. Which means that there is a considerable percentage of children among them. These are patients who have problems and receive antileptic treatment. Because, after all, epilepsy does not last a lifetime, there are syndromes, especially in children, in which treatment is carried out for several years, after which it is stopped. And they do not have epileptic seizures later in life.
Certainly for parents, the first such seizure is extremely stressful. What do you advise them to do at such a time?
- At such a moment, it is necessary to observe exactly what is happening, to see if the jaw is tight and, if possible, to open the mouth. To see if the airways are open - this is of great importance. Usually even
major seizures end within a minute or two
But if this continues, "Emergency" is called. Diazepam should be instituted and medical measures and further investigation should be taken accordingly. It's about the first time. If epilepsy is diagnosed, treatment must already be started, which is appropriate for the type of epilepsy and the type of epileptic seizures. Which significantly reduces the risk of them repeating. There are so-called benign epilepsies in which seizures are easily controlled by appropriate antiepileptic treatment and they are favorable for the future prognosis of whether or not they will be present.
What is the percentage of resistant patients?
- Approximately 30% of patients with epilepsy are resistant to medical treatment and need to be evaluated for surgical treatment options. Resistant epilepsy in Bulgaria is a tragedy for over 10,000 people. Epilepsy affects 1% of the Earth's population, about 50 million people worldwide, and for Bulgaria - over 70 thousand. In one year, 40 people fall ill per 100,000 population.
Parents complain that they have to wait for months for permission from the He alth Insurance Fund for a nuclear magnetic resonance examination. Is this possible to change?
- Nuclear magnetic resonance should be included as a diagnostic tool, because this imaging study gives us precise information about the nature of the disorders in the brain and helps to accurately determine the type of epilepsy. Access to children in need should be accelerated and facilitated. In the current situation, they wait no less than 2 months until they receive approval from the He alth Insurance Fund. During this time, the condition of many of them changed catastrophically, and not for the better. The number of follow-up examinations by a specialist should also be increased, because the current four examinations are absolutely insufficient. Children develop quickly, without enough examinations we can miss the situation, ie. their treatment, out of control.