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The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

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Stories

Barbara

Neha Kinariwalla

 Barbara chose not to post a photo. We respect the rights of patients to preserve their privacy.

Barbara chose not to post a photo. We respect the rights of patients to preserve their privacy.

In December 1995 at 7 years old, I was diagnosed with liver failure, and within 6 days I had only 10 percent chance of surviving. The transplant was successful, and ever since then my liver has been fine. But while in the hospital for 6 weeks after the transplant, I began seeing weird things, like an alien going around my father's head that wasn't actually there. The doctors just assumed these visions were a side effect of all the medicine I was taking, and did nothing about it; not knowing that these were seizures I was experiencing from my brain being attacked during my near-death experience. Because they did nothing, the seizures changed from simple partial ones-seeing things- to complex partial seizures three months later, where I started to stare and speak nonsense. I went to the emergency room, and was diagnosed with epilepsy. The doctors started prescribing epileptic medications on me right away. But over the 16 years that I've had seizures, none of these medications would cure them; it only decreased the frequency of the seizures. At the age of 20, I had brain surgery to take out the scar tissue causing my seizures. Unfortunately, the doctors could not go too deep, because I had a chance of going blind or having memory problems from the surgery. Leaving a little scar tissue deep in my brain caused me to be seizure-free for only 6 months; then they returned from the tiny scar tissue still in my brain. When they returned, the frequency was only once a month (unlike before surgery, where they were 2-3 times a month), and they weren't as strong as before (I could finish doing dishes during the seizure fine, just with no memory of doing it!). Because of the seizures returning, my neurologist tried many different anti-seizure drugs on me. Ever since I was diagnosed with epilepsy back in 1996, I've been on about 15 different medications, all just reducing the frequency. Taking medicine is tough with the side effects: one drug made me a psycho, easily making me angry and causing me to overreact to family problems; another would make me brain-dead tired all the time; one gave me migraines very often; while another depressed me so much that I attempted suicide on it many times. I sure wished many times that there was such a thing as anti-seizure medicine that could prevent the seizures and not have side effects, all at once. In May 2012, my doctor tried a new drug on me, initially for my anxiety attack problem that began in summer of 2009. Ever since I started this drug, Clonazepam, I have not had a single seizure! Now 22 months seizure-free, I am finally learning how to drive at the age of 25. My mother says that everything happens for a reason. My anxiety problem, which started a year after my brain surgery, has led to my doctor finally finding the right anti-seizure drug for me. And to show how grateful I am that my seizures went away, I, a current student at Stony Brook University, am looking into ways that the college can start raising money to help find a cure for epilepsy.