14 . How can you explain the situation to your family and friends ?

It is important to explain to your friends and to members of your family what Dravet syndrome is. For instance, you can say: It is a rare life-lasting epileptic disorder with an onset in the first year of life. It is not contagious. For the moment there is no cure for this disease, there are only treatments for the symptoms. You can mention the situations that trigger seizures. Tell your relatives that witnessing a seizure can be a big emotional shock.

You should not feel ashamed to say that it is difficult to cope with the disease and to ask for help.

When someone agrees to watch over your child, do not hesitate to make a list of actions in case your child has seizures. Explain how seizures look like and how to manage them. You can explain and show how to use the supplies and how and when to give rescue drugs. Leave prominently the written emergency plan in case of a long lasting seizure. And most importantly: do not forget to take your phone.

You may find other useful information to explain Dravet syndrome to your family and friends in this booklet.

 

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