Rare epilepsies

Rare epilepsies are referred as illnesses that are diagnosed with less than one person in every 2 000 people. There are about 8 000 different rare illnesses. As we learn more about illnesses, the number of rare illnesses keeps growing. When an illness or symptoms are rare, there will be special needs, knowledge on concentration in diagnosis and care.

Some forms of epilepsies are considered rare. There are about 30 of these. Also, there are around 140 other rare illnesses, where epilepsy is a significant symptom.

Rare and severe epilepsies

Rare epilepsies are usually severe. Severe epilepsy is a state where regardless of decent medicine, there are significant daily life limiting symptoms present, such as recurring seizures, cognitive or behavioural problems, decreased level of development or side effects of treatment.

There are around 9 000 people with severe epilepsy in Finland, which is about 20-25 % of all epilepsies. Severe epilepsy can occur at any stage in life, but most severe epilepsies begin in childhood.

Alongside with seizures, individuals with rare and severe epilepsies often face challenges in functioning and intellectual activity which can cause more harm than epileptic seizures.

Causes of rare epilepsies

There are different reasons for rare and severe epilepsies, some are known well but others are diagnosed based on typical features, such as type of seizure, the age of onset or the brain’s electrical curve.

Known reasons are dysfunctions of the brain’s development, brain damages or chromosome and genetic abnormality. Diagnostic gets better all the time as gene research and the brain’s scanning procedures improve.

Examples of rare epilepsy

Forms of rare and complex epilepsies include, for example, progressive myoclonic epilepsy type 1 (Unverricht-Lundborg disease, ULD-EPM1), infantile spasm syndrome, Dravet syndrome, Rasmussen's encephalitis, Northern epilepsy, Sturge-Weber syndrome and tuberculosis. In addition, there are a number of epilepsies associated with rare structural, inflammatory, and immunological causes, as well as epilepsy associated with rare chromosomal aberrations and genetic defects.

Information related to rare epilepsy has been compiled in Finnish on Health Village's (Terveyskylä) -website. At this stage, Health Village has diagnosis-specific information in Finnish on the following rare epilepsies:

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