August 19, 2019


Robyn is a 33 year old female who was 23 when she had her first seizure. She wasn’t diagnosed with epilepsy until she turned 24. When she was diagnosed there was a period of relief because she finally had an answer for what was going on but that was short lived. After being diagnosed and told everything in her life was going to change, being told everything she was no longer allowed to do, that was depressing. She was told she could no longer live on her own, could not longer drive, cook, clean, etc. That’s a hard pill to swallow when you are an independent 24 year old woman.

When Robyn first contacted EAF to become a client she needed assistance with her diagnosis, figuring out exactly what was going on with her, without having insurance. It can be very difficult finding help with a chronic illness when you don’t have the resources (like insurance) to give you access to the care that you need, especially when you still need a diagnosis. The neurologist was actually the one who referred her to Epilepsy Alliance Florida.

Robyn has been a very active participant in both our Medical Services program and our Support Groups. She even brings her family with her to the Support Group meetings. The support group meetings have helped her learn more about epilepsy. The medical services program helped her discover what exactly is going on in her brain (even though the doctors don’t know how to fix it … yet). Participating in the support group and the medical services programs even helped her with her disability case. They allowed her to have the records needed to apply for disability and in SG she learned about the process of applying for disability and what information they are looking for on the application.

But the most significant activity to make a difference in Robyn’s life was being able to be a part of the Embrace Watch trials. Because of the types of seizures Robyn has, many of them had been going unnoticed. Being able to be apart of the Embrace Watch trials (and having the watch now) has helped her keep track of her seizures and report them to her neurologist. She never would have even known about this opportunity if she wasn’t apart of Epilepsy Alliance Florida and an active Support Group participant.

A major change in Robyn’s life after attending support groups and getting the Embrace Watch has been her freedom. She no longer feels she needs to be confined to her house. She now feels comfortable going out of the house because help is only a phone call away if she needs it.

Right now the main challenge Robyn continues to face is getting her seizures under control or even to just have less seizures. She is going to continue to participate in support group because she has learned so much about other options to help treat her seizures and how to look out for different triggers. Robyn is hopeful that the doctors will one day find the right treatment for her and she will be able to do all those “don’ts” again.

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