Personal Stories

Gasper Mithans - Slovenia

My Life Story

I was 14 years old when I had my first epileptic seizure. At this age I had just finished elementary school and started secondary school. Being previously an excellent pupil, symptoms such as memory and concentration problems came as a great shock and personal challenge. However, I soon realized that there were many more important things to life than good marks.

My first encounters with the local neurologist and the results of treatment were far from promising. Therapy did not stop my night seizures and absences, which had side effect of making me extremely tired. Fortunately, upon changing neurologists, my medical condition improved. My seizures finally stopped and I made great progress in school.

Although my absence seizures were almost always seen only by my family members, the feeling of not having seizures meant "being steady" and this stability contributed to positively to my self-esteem. Talking about my condition was never a big issue for me. However, I often found it was not always easy to explain the implications of my illness and preferred to avoid feeling awkward.

After two years my seizures re-appeared. This was just before I went to university (which meant I had to move to another city). I had to deal with the similar problems of before, such as absences and study difficulties. It came as a great shock and disappointment to me when I did not graduate from secondary school.

The most dreadful event that happened to me occurred that summer after I had finished school. I went into status epilepticus on the way back from a family holiday at the seaside. I hardly remember that day; seeing it only later on the faces of my parents in the hospital where I had slept for almost 2 days because of the sedatives that they gave me to calm me down. The most painful long-term consequences of those seizures were permanent memory loss and the second-hand memory of the situation. I still cannot remember some parts of my life, particularly from my childhood.

It was in that year of 2001 that my doctor, after many medical examinations, made his diagnosis. By this point, I was thinking, on the one hand, "this is temporary, it will pass just as the illnesses I had before" but on the other hand "what is the cause?" I got the answer to the second question with the consolation that it could have been much worse. Very little is known about ring chromosome 20 syndrome, a diagnosis which can make fools out of general practitioners. However, I got some good results from genetic testing. The tests showed that my parents do not have r(20), so it is unlikely that it is hereditary and, above all, that my condition had become stable.

The next year I successfully graduated from secondary school and signed up for cultural studies and anthropology at the Mediterranean city Koper on the Slovenian coast. I finished my undergraduate studies and am in the process of completing a postgraduate degree.

I am very grateful to say that I have not had seizures for more than 5 years. Today I see not only my condition from a completely different perspective, but also the concept of health and illness in general. This is why for my diploma, I have decided to research social and individual aspects of epilepsy treatment. As I pointed out in my hypothesis, there is a tendency for more participation and responsibility in epilepsy treatment from the side of individuals and their relatives with regards to biomedical, alternative and complementary medicine.

My parents and I agreed to take part in an international medical research study on r(20) syndrome which was held in France. The researchers took samples of my skin tissue, did blood tests and video telemetry. I hope in this way we have contributed to better knowledge of the syndrome. We are still waiting for results from the study.

My greatest wish is to get a license to drive. In Slovenia in order to drive, tests have to be taken including first aid, traffic regulations, a medical examination and 30 hours of driving experience. The results of the medical tests that I took, were not sufficient so I was not allowed to get my license. I am now waiting for additional medical tests. Driving is a really big step, but it is more important to me that I continue to feel well, after all, in my case stress is most likely to be one of the triggers of seizures. This mind-set arose from a personal positive attitude towards myself and towards others, which is what I would like to share with you.

I know that I could not have come so far without the support of my family. There are not enough words to thank them. Epilepsy and ring chromosome 20 syndrome are medical conditions that particularly demand help and a positive response from others. Being unconscious during the seizure makes it very difficult to understand all the panic around you. I know that I often quarreled with my parents when I had an absence, arguing that I was just lost in deep thought.

The risk factor involving the possibility of medicinal side effects, I must not forget to mention, is also high. I was not one of the lucky ones who avoided this possibility. At the time, however, I was unaware that my personality had changed. Therefore I have asked my mother (on behalf of my family) to recall those parts of our lives.

My Mother's Story

In February, 1997, during the night, Gasper had his first epileptic seizure. Before the event no emotional or behavioral changes were seen. It just happened.

Our general practitioner advised us to hospitalize him in the nearby hospital when he next had a seizure. Two months later he had another seizure. The seizures were unusual according to what my husband and I had previously known about epileptic seizures: his body moved to a sitting posture with arms stretched out, his whole body was shaking, eyes were usually closed and he produced guttural and also high voices. They lasted up to one minute, once or at most twice a week, sometimes just twice a month. In the hospital they prescribed him the antiepileptic drug (Valproate). However, in spite of the therapy, seizures still occurred from time to time.

Daily absences appeared after than night seizures; they were more frequent and lasted up to 15 seconds. His gaze was usually pointed down and "absent" with uncontrolled arm movements, shifting from one foot to another and at the end always followed a short laugh. We removed or limited all possible seizure triggers including television. He never felt them coming, neither at the beginning or end of the seizure. We rarely asked ourselves why (at the beginning sometimes), mostly we questioned how and what we could do from each progress or worsening to the next.

Before the seizures started he was quite self-confident, loving, precise, ambitious, good-humored, calm and communicative, he spoke for himself and he liked to talk about things that happened. In primary school he was recognized to be talented in many ways: in art, natural sciences, languages, literature and in other areas. He managed to do everything with great delight, ease and consistency. His IQ tests were above average and he wanted to go to secondary school and later to become an architect.

What surprised and worried us the most was the impairment of thinking and comprehension. Occasionally, he had trouble recalling already very instilled and automated learning, accompanied with shifts in physical and behavioral patterns. He became confused, often tired and insecure. He barely managed to attain sufficient marks at school. Because of the medications he was always tired and also morose, impatient, gruff or apathetic. However, we tried to improve the situation by helping him to acquire new, better techniques of learning and relaxation. On the first day of grammar school we told teachers about his condition, what was happening with him, and what to do in the case of a seizure. Talking to teachers we came to the realization that there is a lot of ignorance, fear, prejudice and stereotyping with regards to the condition. However, when the teachers were informed about his Gasper's situation, they mostly accepted him. Although, some of them considered him "lazy" and "incapable".

Our general practitioner and a clinical psychologist in Ljubljana (the capital of Slovenia) finally, after all these symptoms, sent us to the pediatric hospital in Ljubljana to an epileptologist. During the hospitalization his epileptologist prescribed new therapy (Carbamazepine) and carried out numerous medical examinations (EEG-s, MRI, psychological tests and more). He knew that Gasper had characteristically and behaviorally changed and that some of his intellectual capabilities had temporarily deteriorated. This was confirmed by the tests performed by his neuropsychologist. In the last half of his second year at grammar school, his nightly and daily seizures had completely disappeared.

During this period we often went to the mountains and Gasper did a lot of sports. We talked about how we could improve the quality of our lives even more, how we could overcome the stress. My husband and I have participated in workshops for personal growth, tension balance, relaxation, massages and yoga. Our relationship was strengthened, becoming more honest and intimate. It helped also that our younger son was healthy. We shared housework among all four of us and promoted self-dependence, so that we still had time for pleasant pastimes such as, relaxation, walks, talks, visiting friends, reading books, seminars, and making time for our younger son. All the time we have had a circle of friends who accepted my son's illness. In this view, we have had a way of life allowing the avoidance of prejudice. We learned that all four of us are very different and how to respect that, although I am aware we could always do more.

For two and a half years, Gasper did not have any seizures, his EEG showed no abnormalities. This culminated with the fear of the potential side-effects involved in long-term use of medication is why our family decided to stop the therapy. We did not tell our doctor. In April, 2001 Gasper started to feel worse. He felt dizzy, had periodical "double sight" and from time to time problems with memorizing. He then tried different therapy (Carbamazepine, Ethosuccimide, Clobazam).

We spent part of the summer at the seaside and on the way back Gasper experienced a bout of status epilepticus and he had to be hospitalized. His neurologist in Ljubljana decided to do additional medical examinations (biochemistry) because status left consequences on the memory base and his articulation became slower. However, no results were given. His EEG record was shown to at least 20 epileptologists in Slovenia and 15 abroad at international congresses and meetings. A hint was given from a doctor in Marseille and confirmed by a doctor in Rennes who at that time (2001) had the most patients with ring chromosome 20 syndrome in Europe. The genetic examination was made in a genetic laboratory in Ljubljana. Thus, they made the diagnosis.

That was a very powerful experience for us all. However; it brought us closer together and Gasper opened up and expressed many oppressed emotions and unconscious beliefs.

After long-lasting medical examinations Gasper's neurologist found out that it would come to impairment irrespective of stopping the therapy. Genetic tests showed that the illness is not hereditary. With new prescribed antiepileptic drugs (Carbamazepine, Clobazam and Lamotrigine) there were no visible seizures, just occasional abnormalities were seen on EEG. Now he has not had seizures for over five years, with therapy causing no real side-effects other than a slightly stronger necessity for a solid pattern of sleep.

It was important throughout the time of Gasper's difficulties that we discussed our feelings and our pain without inhibition or outside judgments. We were fortunate that we had excellent healthcare and attention from the neurologist. It was furthermore very important that we did not do things to discourage Gasper but rather that we encouraged him to do "the impossible" when he wanted to. My husband and I shared among each other thoughts, doubts and distresses, even when we did not know how to describe them. We shared the deeds of attention and tenderness. It is especially important that we never victimized each other, realizing that it is possible to live nicely, to laugh and to relax. The nutrition requirements are also essential, so I made an effort to prepare healthy food every day. Many times we wrote down questions for the doctor at home, rather than check glossaries because that would just scare us. We were not in contact with parents of children with the same illness. We did have ups and downs, but love kept us going on. Gasper made this improvement by himself and he is an amazing person.

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