A UNC Grad with Chiari Malformation Creates Product to Protect Against Epileptic Injury

 

Ashlyn Sanders was a graduate student at Duke University when she experienced her first seizure. The UNC alumna was shocked. She pursued an MRI, which ended up discovering a previously unknown condition: a Chiari malformation. Now, Ashlyn is using her knowledge to create a product to help others with epilepsy and seizure-related symptoms. Read her story in The Daily Tarheel.

Chiari Malformation

A Chiari malformation is a rare skull condition in which brain tissue extends into the spinal canal. Generally, this happens because the skull is misshapen or smaller, so the brain is pressed down. There are three types of Chiari malformation:

  • Type I – pediatric form, develops when skull and brain are still growing. Symptoms appear in childhood or adulthood. These include neck pain, headaches, balance and coordination issues, scoliosis, tinnitus, vision issues, and numbness of the hands and feet.
  • Type II – congenital, present at birth. More tissue extends into the spinal canal than in Chiari malformation type I. Symptoms include arm weakness, problems with swallowing and breathing, and issues related to myelomeningocele, a form of spina bifida.
  • Type III – congenital, present at birth, rarest and most severe form. In Chiari malformation type III, a portion of the cerebellum or brain stem extends through a skull opening. Symptoms include neurological problems.

Learn more about Chiari malformation on our website. 

Ashlyn’s Company

According to the American Academy of Family Physicians, approximately 20-30% of patients experience tongue-biting damage during a seizure. This can be combined with other oral behaviors, such as tooth grinding. Faith Cantway, whose son Nicolas has seizures, notes that tongue-biting during seizures leads to pain and an inability to eat certain foods.

After Ashlyn’s seizure, and subsequent Chiari malformation diagnosis, she committed herself to making a positive change for patients. So she created NeuroVice LLC.

NeuroVice

NeuroVice LLC is an innovative medical technology company headquartered in Cary, NC. The company’s main product is PATI (Protector Against Tongue Injury), a device designed to reduce or prevent tongue injury during epileptic sessions.

Before a seizure, many patients experience an “aura.” The Epilepsy Society describes an aura as a warning sign before a tonic-clonic seizure. Those having an aura may experience sudden emotional changes (fear, joy, happiness), muscle stiffness or numbness, tasting or smelling something unusual, seeing bright lights or hallucinations, feeling deja vu, or a strange wave-like feeling in the head. Because the aura is different for each patient, if you have Chiari malformation or epilepsy, you will most likely learn what your specific aura is like.

Once an aura occurs, patients can immediately put in their PATI. Ashlyn designed the PATI so that it can be carried around on the wrist. The PATI can be discarded after use, and later restocked. In addition to using it when a patient feels an aura, Ashlyn notes that the device can also be worn during sleep.

So far, basketball player Charles Barkley has signed on as an investor. As the company moves forward, Ashlyn hopes to license the PATI technology.

In the meantime, families like Faith Cantway’s are hopeful for what this product can do. Faith and her son will join focus groups on PATI. She says that this product could be life-changing, as she could never previously find a preventative epilepsy product. Now, she hopes:

“that the product will be available ASAP and will help Nicolas and countless others who not only brave through a life with seizures, but also face consequences that tongue biting brings.”


Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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