A personal note
As a parent whose child has been diagnosed with epilepsy, a family member has been diagnosed, or if you yourself have epilepsy, you are constantly seeking a balance between epilepsy, epileptic seizures, and the daily occurrences of life.
- Balancing between epilepsy and your routine daily life;
- Balancing between facing the risks and, often, the embarrassment of having a seizure and attending public events;
- Balancing between staying bright and taking medication(s) to control seizure(s).
- Balancing between protecting yourself and protecting others, especially for parents with teenagers.
There are more points I could mention.
Life with epilepsy is challenging, and even more challenging are the psychosocial burdens such as stigma, judgment, lack of understanding, discrimination, and lack of empathy.
I am content and grateful that I had Nani by my side. Taking care of Nani was a valuable training and an experience in understanding people and realizing how heavy the burden of life can be for someone with epilepsy, as well as for their closest family members.
Together, you and the Stichting Epilepsie Curaçao Naïria Winklaar, we can advocate for a better quality of life and full participation for individuals with epilepsy in the Curaçao community.
Sincerely yours,