My wife and I were discussing seizure disorders with friends and the conversation moved to our daughter, Dr. Alfonsina Q. Davies (Nina). We shared that her life from the day she was born was very hard since she never knew when the seizure would strike. She had a regimen of daily medication in spite of two brain surgeries. She was free of seizures for a few years after the first surgery, however the anxiety, fear and isolation that she felt did not leave her.
Once the seizures returned, she coped with them as best she could, but her life was centered around the disorder. She had to take medication on schedule, go to bed and get up on schedule, limit what she could eat or drink and continue to have follow-ups with doctors. She never discussed her illness with anyone for fear of discrimination. All of this while working full time.
We also discussed the serious psycho-social problems that individuals with seizure disorders often have. These negative aspects affect family, social relationships, academic achievement, opportunities for employment, housing and the ability to function.
We explained that the quality of life for our daughter was very bad. From research done and reported a few years ago, our daughter had, on average, about 13 good days a month where she felt healthy, physically able, and mentally able. Can you imagine living where 17 days a month you do not feel “normal”. You might be depressed, have aching muscles after a seizure, have a serious injury or just feel terrible. This, we explained, was the life of our daughter.
The Quality of Life Study below, gives very clear and impactful information regarding the effects of epilepsy on daily living. Our daughter was in the worst and most damaging category, “Any Seizures in last three months”.
It takes courage to live with epilepsy. Our Nina was a very special person who attained all of her goals in spite of her constant pain and fear.