Epilepsy advocates come in many different varieties. They can be those of us who live with Epilepsy, family members or good friends of those with Epilepsy, doctors and others in the medical field who deal each day with Epilepsy…or simply people who understand this complex world, and care.

When I began writing about living with Epilepsy, I decided I wanted to tell both my story and the stories of others, those who live with the disease and those who are connected to those who live with it.

I discovered something I’ve been saving for nearly 8 years. It’s a wire chest full of get-well cards and notes that people sent me in early 2003 when I got sick and received my diagnosis of encephalitis and meningitis. There are literally hundreds of cards, emails, photos, notes.

This is an open question for all of you with college-aged kids, or kids who are approaching college-age. What are your options? Have you consulted with your neurologist(s) regarding this question? Do you know of any universities or small private colleges with programs?

Speaking up and speaking out CAN help. With 3 million people in the U.S. living with Epilepsy and nearly 50 million people around the world, we can stand up and be noticed!

Epilepsy is one of those illnesses that sort of has tentacles. If you are suffering, you tend to bring others down with you, whether it’s with their concern or their care; but, only the ones who deeply care and want to, or already do understand the condition.

We never conceal my Epilepsy from our daughter. As she grows, I haven’t been quiet about the fact that other parents are not in agreement with this approach. But, as I’ve said, it’s the way we have chosen to tackle parenting when one parent lives with a chronic disease.

Did I lose my job because of my Epilepsy? I hear and read that people feel they have lost their employment due to their seizures, and it’s something I have considered for months and months. Could they have? Would they have? Was it my seizures that led them to tell me there was no longer a spot for me?

I was told that one of my daughter’s friends will not be able to come over to our house for a play date because of my ‘situation’ as it was termed. The mother does not want to expose her child to ‘anything scary’, i.e. a seizure.

Epilepsy and SUDEP has become their mission with the Danny Did Foundation. And, they are doing a fantastic job. Their spirit and their drive to raise awareness and try to teach more people about Epilepsy and SUDEP in particular has truly inspired thousands of us!