- Febrile infection-related epilepsy syndrome - FIRES
- Interviews
Carla's interview
How did all start?
Isa had a perfectly normal development till she was 10 months. She had an unspecified fever and 3 days later without fever, she had her first seizure, that developed into an epileptic status during 52 days in an intensive care unit.
Do you already have a diagnosis? How long did it take you to get it?
She made all the possible exams and genetic tests and all were negative. FIRES was the diagnosis. 3 months. after the result of the genetic test.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology and metabolic diseases for the Ketogebic diet.
What has been the most useful thing for you so far?
Know other parents. Intensive therapies. CBD
What have been your biggest difficulties?
To deal with Isa's Neurologist
How has your social and family environment reacted? Have your social or family relationships changed?
a lot. It's very hard to return to normal life. I don't know if it would ever be normal again.
What things have you stopped doing?
Working. I'm an English teacher in Portugal in a private school. I loved my job. stopped having a normal and happy life.
What do you think about the future?
It will be very hard…
So far, which years have been the best years in your life? What have you done during them?
Till 9th April 2017 I was very happy with a beautiful family. I had the best job I could have. I had two lovely normal children. I was fully complete woman as a mother, wife and daughter. Now all ended with this terrible FIRES that appeared in our lives.
What would you like to do if you didn’t have your condition?
It's my daughter condition. I would like to have my life back!!!
If you had to describe your life in a sentence, what would it be?
HELL
Finally, what advice would you give to a person in a similar situation?
Never give up. No matter what we have to fight four our children. They only have us!
