When doctors told Ashlyn Sanders that she’d have to take a step back from her fast-paced life to deal with a seizure-causing neurological condition, one of her greatest challenges was the amount of free time she suddenly had to fill.
To cope, the Duke graduate student and former White House intern did what came naturally: She got to work, inventing a device that would help her and people with conditions like hers get back to living normally.
On Oct. 2, 2014, Sanders was diagnosed with a condition known as a Chiari Malformation – a mass of brain tissue pushed into the spinal canal.
She immediately had emergency surgery to remove the part of her skull putting pressure on her brain stem, but the seizures continued. Sanders had to learn to accept that the condition might be something she deals with, in some measure, for the rest of her life.
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For someone who is used to being an achiever, the diagnosis was stunning – and inconvenient.
Sanders had graduated from UNC with a degree in mathematics in just three years and was beginning a master’s program in bioethics at Duke University, which she finished in December of 2015. In between, she was an intern with the White House’s Office of Public Engagement and the Office of Science and Technology Policy.
The work she’s done to stay busy has focused on the lesser-known danger of seizures – the damage that sometimes can be done by the involuntary clenching of the jaw during episodes, which sometimes leads to severely bitten tongues or broken teeth.
Sanders did some research and realized nothing was on the market designed to address this problem. So she set about designing a prototype, for which she’s currently fundraising $20,000 through an online fundraising page at Indiegogo. So far, she’s secured $2,000 in investor funding and a further $2,500 in donations. That money will be used to further design and fund the licensing process for the product – a tongue protector.
Sanders, now 24, spoke about her invention, as well as how she’s dealt with her condition and balanced it with her professional ambitions. These days, she lives with her twin sister and commutes to UNC’s campus where she is finishing prerequisites for med school.
Q: Let’s start with your invention. What is it, and how did you come to realize it needed to be invented?
Sanders: When I was diagnosed, I had some of the classic seizure symptoms, like tongue-biting and foaming at the mouth. I wasn’t driving for a while. But I asked my neurologist one day at an appointment if there was anything recommended for patients like me, and I was told there wasn’t one available on the market.
While patients sometimes use dental guards to remedy these symptoms, I did some research. They’re expensive and tend to be more appropriate for aesthetic purposes. I found an epilepsy forum post online solely devoted to tongue biting. Some people said they used a dental guard, but that they would actually bite through it.
Q: How would your invention work?
Sanders: With the prototype, the patient could wear it around his or her neck or put it in a case. A lot of patients have some trigger or sensation that lets them know a seizure’s about to happen, and they’d be able to use it then. Most seizures last for a couple seconds to a couple minutes. It would be removed after the seizure.
Q: Even though you had successful surgery in 2014, you’re still having seizures. Do you know why?
Sanders: When part of my skull was removed to relieve that pressure, I was still having episodes. By the time they did another MRI and saw the pressure was alleviated, they were like, this might be a symptom of all the things you went through and how traumatic it was. They said I might have Post-Traumatic Stress Disorder, which is a diagnosis of exclusion. If there’s no physical reason, it’s usually related to PTSD or psychogenic seizures.
Q: Most people think of PTSD as a condition that develops following an emotionally traumatic moment. What do you mean by PTSD in this context?
Sanders: I always associated it with a social situation, too – someone coming back from war, or a rape victim. But there’s recently been some writing about PTSD, about how it’s not just about social situations but how it can happen to anyone whose body has something happen to it and doesn’t have time for it to process it.
Q: You had – and still have – a lot going for you. How have you been able to adjust to having an perhaps chronic condition after accomplishing so much and wanting to accomplish so much more?
Sanders: In terms of prognosis, it’s one of the toughest things to process. With a physical condition, like cancer or chiari, once the problem is treated, you think you move forward when it’s treated. I’ve been told people grow out of PTSD, but I’ve almost adopted it. It’s hard for me to envision a day where I can say I don’t have it, where I don’t have PTSD. ... Though PTSD is my diagnosis, I have many good days and have improved tremendously and am optimistic about overcoming the residual challenges.
Q: What helps you manage that understanding?
Sanders: When I wasn’t in school, during the summer of 2015, I wasn’t doing things. I was actually having more episodes than when I was busy and in school. My physicians reached the conclusion that, even though for most people relaxing and taking time off helps with stress, it was the opposite for me. When I was working on my business, when I was volunteering, I noticed I was having more success with my mental and physical condition. It has definitely helped me to recover quicker and my mind to focus on something other than surgeries or my episodes.
Q: Once you’ve solved this problem, what’s next?
Sanders: I just always loved math and problem solving, so I kind of fell into that major. When I got into college, I wasn’t sure what I wanted to do. I thought I might want to do something in medical field, maybe policy, and this experience definitely affirmed those aspirations. I think we could learn a lot in terms of scientific innovation from patients who experience these things first-hand.
I do wish that there was this outlet for patients who are either going through treatments who are looking to funnel their energy into something. That would be an interesting business model, something the government could address with policy.
Gargan: 919-829-4807; @hgargan
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Go to http://bit.ly/2mKu1EU to learn more about Ashlyn Sanders’ device and her story.