Brittany is Resilient
Brittany: #MyClinicalTrial
 

#MyClinicalTrial: Brittany's Story

Meet Brittany, manager of patient recruitment at Engage Therapeutics, Inc., and a woman living with epilepsy. She found complete seizure control after participating in a clinical trial and is a passionate advocate for clinical trials. Brittany spoke with Liz Dueweke MPH, manager of communications at the Epilepsy Foundation, about her journey.

Tell me about your journey with epilepsy. When were you diagnosed?

I was diagnosed when I was 9. A few weeks before I had my first seizure, I wasn’t feeling well. My mom was a police officer and I was in the backseat of her car when I passed out and had my first seizure. I found out later that I was having auras (first symptom of a seizure) well before that first seizure. 

What was that experience like? 

It was really confusing. When they did my EEG (electroencephalography) and MRI, they couldn’t find a clear reason for the seizures. My doctors would accuse me of faking it for attention. As a child I did not understand, and it upset my mother.

It was hard to find a neurologist. I grew up in northern Florida and we didn’t have health insurance at the time, so I didn’t have access to great care. For the first ten years after my diagnosis, I was seeing a primary care physician. 

Were your seizures controlled?

It wasn’t until I advocated for myself and joined a clinical trial that my seizures were controlled. My seizures were stress related, so if there was an exam, or even a birthday, they were triggered. I also tracked my menstrual cycle and found they were related to that as well.

What brought you to a clinical trial?

Brittany EEG Photo
 

I decided to pursue a master’s degree in public health and got accepted to Boston University. I found out about the research being done at Massachusetts General Hospital. I decided to reach out and obtain a job as a graduate research assistant in neurology. My principal investigator in my lab then referred me to at doctor at the Brigham and Women’s Hospital in Boston. 

I had a seizure while at the Epilepsy Monitoring Unit at Brigham and Women’s. I was there to be reviewed as a possible brain surgery candidate. They found some sclerosis on my hippocampus. However, there was no definite plan that brain surgery would stop my seizures. A physician at the EMU had told me I would be an ideal candidate for a clinical trial for Onfi, so I decided to pursue that option. 

What was the experience of a clinical trial like?

As a person who didn’t know much at the time, I remember getting the informed consent and not reading it. I just initialed at the bottom of each page. As a research coordinator, I do not suggest people do this. I encourage possible research patients to read every word of the informed consent and ask questions to your research team.

During the clinical trial, I was reimbursed for my time, received free medical scans and lab work, along with physician check ups which were all covered by the sponsor. 

The clinical trial was testing how sleepy Onfi makes you. I had to wear a sleep watch and attend visits with the clinical research team. I am still very tired from taking Onfi, I need 8-10 hours of sleep a night, but being tired is better than having seizures. 

Overall it was a really great experience, but it’s important to understand what is going on.

Do you think others should try clinical trials? If so, why?

If you’re uncontrolled and tried multiple treatments, and your physician thinks it is a good idea, I think clinical trials are very useful. You can get some very good health data from the tests they perform that you can apply to your own care.

It also advances the science for people with epilepsy. There are people who have seizures that are not controlled by current treatments. Even if it doesn’t work for you, they can get the data on why it may not work for you to help someone else. 

What do you wish other people with epilepsy knew about clinical trials?

I wish they knew they weren’t lab rats. Scientists are not trying a treatment just for the sake of trying it, as it is very difficult to get a clinical trial up and running. They are working to get data to make it the best kind of medication or therapy on the market. 

Also, if you are on the placebo for the trial, your doctor will be sure to manage your standard of care. You can also withdraw at any time in case you don’t end up liking the experience. The entire effort is meant to help the patient.

I believe that clinical research is very important in bringing new medication and treatments to the public, because without individuals joining trials, we would never get new treatments on the market. 

Brittany with Heisman Photo
 

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Authored By: 
Liz Dueweke MPH
Authored Date: 
10/2019
Reviewed By: 
Andres Kanner MD
Elaine Wirrell MD
and Jacqueline French MD
on: 
Monday, October 21, 2019