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Dear TESS Friends,
November is an important month for TESS Research Foundation – it is National Epilepsy Awareness Month! As you know, SLC13A5 Epilepsy is a genetic epilepsy and seizures are the most well-known symptom of this disorder. TESS is aligning with our epilepsy partners to raise awareness and share information, as we continue to drive research for improved treatments and better outcomes.
Epilepsy is quite common (1 in 26 people will be diagnosed with epilepsy in their lifetime), but I personally did not know anything about epilepsy until I gave birth to my daughter Tessa 18 years ago. Like all of our TESS Superheroes, Tessa began having seizures shortly after she was born. I learned a lot about seizures in her first few weeks of life. I learned that there are many different types of seizures and that Tessa has more than one type of seizure. She also has the most dangerous type (it has a fancy Latin name: status epilepticus). It wasn’t until Tessa had her third brain MRI at five months old that I saw the diagnosis “EPILEPSY” written on the order form.
Epilepsy felt like a scarier diagnosis to me than seizures. It felt like a shift from an event (seizure) to a life-long condition (epilepsy). This month, I hope we can simultaneously tear down the stigma that surrounds epilepsy while also acknowledging how frightening seizures are. I have seen more than 100,000 seizures in my life, and the only thing I know is that my heart races with fear every time. What helps calm my fear is knowledge about epilepsy and a plan for what to do in the event of a seizure.
Read on for five things YOU can do to help spread awareness this month!
Yours always,
Kim Lodato Nye
Founder, TESS Research Foundation
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