Caregiver: Mandy
Relationship to Loved One: Mother
Loved One with Epilepsy: Ethan
Relationship to Caregiver: Son
What is the official diagnosis of your loved one?
Epilepsy, was complex partial, now generalized.
What is your definition of epilepsy?
Seizure disorder.
When was your loved one diagnosed with epilepsy?
7 months old.
How did it change your life?
Limited and full of fear.
What was your initial response of his/her first seizure?
Extremely scared and confusion
What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
My son’s limited abilities and lack of a normal social life and the fear of his future.
What are some of the DAILY challenges you face?
Same as above.
What are some false thoughts about people with epilepsy?
That it is contagious and that it doesn’t affect many people, which is untrue.
What is your biggest fear for your loved one?
That he won’t be able to fulfill his personal goals in the future.
Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
No.
Has medication ever controlled the seizure(s) of your loved one – i.e. sometimes medication stops them; sometimes it doesn’t work at all; sometimes it creates a different kind of seizure.
The last couple of years it has been more managed but not fully controlled
Have you seen/heard/personally witnessed any new form(s) of seizure meds? If so, what are they? Do you consent if your loved one is willing to try one or more of these meds?
Yes, Vimpat, currently on it.
What are some of the positive changes that have affected your life due to epilepsy, if any?
That it has made me a stronger person and appreciate freedom.
Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
To not feel alone. There are others that feel the same as they do.
What’s one word you want the general public to think of when they hear the word “epilepsy?”
Fear.
Is there anything else you want the general public to know about epilepsy?
That it affects people differently, to not generalize all peoples struggles or lack of due to what they have been told, read, or based off a person they personally know.