It’s believed that more than 50 million people worldwide suffer from epilepsy. The brain disorder can cause hundreds of seizures a day, turning patients’ lives upside-down.
Meet two young women who say this disease created a friendship that will last a lifetime.
Kellee Chavis and Heather Brookins had no idea they had so much in common.
“When I was little, in elementary school, I had problems with reading and writing,” Kellee says.
“I was having some learning disabilities,” Heather adds.
Both suffered from memory loss and dizzy spells for years. It turns out they were having hundreds of seizures a day.
“If somebody tends to have unprovoked seizures, more than twice in their lifetime, that means the definition of epilepsy,” explains Hae Won Shin, MD, associate professor in the Department of Neurology at the UNC School of Medicine.
The two young women met in the doctor’s office.
“We just always kind of sat beside each other, our appointments were nearly always around the same time,” Heather says.
They talked about living with epilepsy and the blackouts of time they both experienced.
“I don’t remember my sister’s wedding, I don’t remember family occasions,” Kellee admits.
“I was very self-conscious, depressed,” Heather explains.
Both underwent brain surgery and tried dozens of anti-seizure medications. When nothing worked, they found the RNS system by NeuroPace.
“It monitors the brain activity, looks for seizure activity, and if it detects that it delivers an electrical stimulus,” explains Eldad Hadar, MD, professor of neurosurgery at the UNC School of Medicine.
That stimulus blocks or reduces the severity of the seizure. Heather and Kellee both had the device implanted.
“I’ve officially been seizure free for a year now,” Kellee says.
“It’s literally given me my life back,” Heather adds.
Now Heather has the energy to take care of her 6-year-old son, Jackson. And Kellee just graduated with a degree in healthcare management.
Heather and Kellee continue to benefit from new technology. Despite their busy lives, the two still text each other every day.
NeuroPace recently increased the battery life of their RNS device from four to eight years.
BFFS BEAT EPILEPSY REPORT #2656
BACKGROUND: Epilepsy is a neurological condition, which means it affects the brain. It is also a physical condition because the body is affected when someone has a seizure. It is described as the tendency to have repeated seizures that start in the brain. Epilepsy is usually only diagnosed after the person has had more than one seizure. Seizures are sometimes called ‘fits’ or ‘attacks’ and happen when there is a sudden interruption in the way the brain normally works. In between seizures the brain functions normally. Epilepsy is a variable condition that affects different people in different ways. There are over 40 different types of seizure. Some people are unconscious during their seizures and so they do not remember what happens to them. Each year, about 150,000 Americans are diagnosed with this disorder. Over a lifetime, 1 in 26 U.S. people will be
diagnosed with the disease. Epilepsy is the fourth most common neurological disease after migraines, stroke, and Alzheimer’s. (Source: https://www.epilepsysociety.org.uk/facts-and-statistics#.XPlOUo3JB9M and https://www.healthline.com/health/epilepsy/facts-statistics-infographic#1)
SYMPTOMS AND CAUSES: Because epilepsy is caused by abnormal activity in the brain, seizures can affect any process your brain coordinates. Some seizure signs and symptoms may include temporary confusion, a staring spell, uncontrollable jerking movements of the arms and legs, loss of consciousness or awareness, and psychic symptoms such as fear, anxiety or déjà vu. Some types of epilepsy, which are categorized by the type of seizure you experience or the part of the brain that is affected, run in families. In these cases, it’s likely that there’s a genetic influence. Head trauma as a result of a car accident or other traumatic injury can cause epilepsy. Brain conditions that cause damage to the brain, such as brain tumors or strokes, can cause epilepsy. Infectious diseases, such as meningitis, AIDS and viral encephalitis, can lead to epilepsy. Before birth, babies are sensitive to brain damage that could be caused by several factors, such as an infection in the mother, poor nutrition or oxygen deficiencies. Epilepsy can sometimes be associated with developmental disorders, such as autism and neurofibromatosis. (Source: https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093)
ORAL SOLUTION BREAKTHROUGH IN EPILEPSY: A medication derived from marijuana could help patients with a rare form of epilepsy. Epidiolex, a pure cannabidiol (CBD) with no THC content, was recently approved by the Food and Drug Administration. This comes on the heels of a breakthrough trial, which included the University of Cincinnati Medical Center. Co-author of the study Dr. Michael Privitera found patients with Lennox-Gastaut syndrome (LGS), a severe, yet rare form of epilepsy, showed significant improvement on CBD. The oral solution reduced the frequency of drop seizures, which cause sudden loss of muscle strength. As Ohio rushes to get its medical marijuana program fully operational, CBD is one medication already showing up on health food store shelves. Many consumers are trying CBD tinctures, ointments and gummies for everything from pain to anxiety and sleep disorders. Research will tell us whether CBD really has other applications beyond reducing drop seizures. (Source: https://www.wvxu.org/post/cbd-breakthrough-treatment-epilepsy-could-it-help-other-conditions#stream/0)
ADDITIONAL LINK: https://www.israel21c.org/israeli-breakthrough-may-lead-to-new-epilepsy-treatment/