Purple Day and Epilepsy: How to Talk to Your Child and Those Around You

How to explain epilepsy to a child?

It is often difficult for mothers and fathers to understand how to properly explain what is happening: what to say to the child himself, his brothers and sisters, grandmothers, teachers, coaches. You need to speak honestly and calmly, taking into account his age. It is enough for the baby to know that his brain does not work normally, and because of this, seizures may occur. It is important to emphasize that everything will be fine, because you are there and will help.

How to tell an older child?

An older child can be explained the mechanism of seizures, the role of medication, the importance of sleep, etc. It is necessary to emphasize that epilepsy is not a fault or a shame. It is a part of her life, and it is not at all rare. About 1 million Ukrainians have had at least one experience of an epileptic seizure. More information can be found in the free Epilepsy Guide. Which can be downloaded at here. 

How to convey information to other children in the family?

Children in the family are feeling the changes. If you don't explain the situation to them, they may fantasize and worry even more. Explain in simple terms what epilepsy is, why seizures occur, and what to do in such cases. Give simple instructions: call an adult, don't panic, be there. It is also important to give each child the feeling that they are not "less important."

How to communicate with relatives?

Older people often have more fears and less knowledge about epilepsy. They may not know what to do during an attack or believe in myths such as “it’s bad luck,” “a curse,” or “it’s better to keep quiet.” Provide them with accessible information, print out instructions, show them a video, or talk to a doctor.

How to convey information to teachers and educators?

School or kindergarten is an environment where a child spends a significant part of the day. It is important to be open and explain what epilepsy is, what kind of seizures your child has, and what to do in the event of an episode. Provide written instructions and contact details. Ask them not to focus on the child’s specifics, but to explain to the students general rules of conduct in case of need for help.

A landing page with educational materials has been developed specifically for teachers' convenience, which can be downloaded for free. download.

How to interact with coaches and tutors?

Some parents are afraid to share their diagnosis for fear of “exclusion.” However, withholding information can be more dangerous. Talk to the coach in person, explain that the attacks are rare (if they are) and what needs to be done. Most coaches appreciate your trust and want to help, but they need clear instructions.

How to get help and advice?

If you need help or an example of how to explain it to others, please contact NGO "Epiprosvita"