Andrea Miller longs for the day when she can go somewhere safely on her own.
After all, she is 37-years-old, and should be able to take her dog out for a walk, shop at a grocery store, or collect mail from the mailroom of her family’s apartment building in Milpitas without her parent’s supervision. But in the past few years, Andrea has had no choice — her parents are her lifeline.
That’s because at any given moment, Andrea’s brain can unexpectedly release a burst of electric activity that causes her to temporarily lose control over her muscles, behavior and consciousness — a phenomenon know as a seizure. If her parents are close by, they move any nearby people or objects out of Andrea’s way, and turn her on her side to make sure she doesn’t choke on her tongue or saliva. If her symptoms last longer than five minutes, they call 9-1-1, which is the protocol for handling seizures of that length.
Last year Andrea was diagnosis with Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy that affects 1 to 2% of all adults with the condition. Even with medication and an implant in Andrea’s chest and neck that can help regulate her seizures, the Millers never know when, where or how severe Andrea’s next seizure will be — and there are usually six per month. The unpredictability has Andrea’s father, Greg, and mother, Cathi, watching their daughter like a hawk, and Andrea herself looking for a way to maintain a sense of independence.
Andrea Miller’s father, Greg Miller, talks about his daughter’s rare form of epilepsy called Lennox-Gastaut Syndrome during an interview at the Silicon Valley Independent Living office in San Jose, Calif., on Oct. 21, 2024. Greg, who uses a wheelchair, has multiple sclerosis and spinal cord injuries. (Dai Sugano/Bay Area News Group)
“I think its kind of like the social expectation of when you grow up, you’re supposed to move out on your own and no longer living with your parents,” Andrea said recently in an interview, while Greg and Cathi sit on either side of her. “I don’t really have that experience. I guess it kind of makes me feel like a toddler in an adult’s body.”
Fortunately, there are devices that can help. The Millers are looking to purchase an EpiMonitor, an FDA-cleared seizure monitoring app that connects to a medical watch. The watch can track Andrea’s vitals and send data to the app downloaded on her phone, which then alerts her of any impending seizures. If Andrea is alone somewhere, the device also notifies her parents and sends over her exact location so they can offer assistance or call first responders.
EmbracePlus, an FDA-cleared wrist-worn wearable device made by Empatica (shown in this product photo) with the EpiMonitor app, can detect possible convulsive seizures. Andrea Miller, of Milpitas, who is diagnosed with a rare form of epilepsy called Lennox-Gastaut Syndrome, hopes to receive one of these devices. (Photo courtesy of Empatica)
The current price for the EpiMonitor app and medical watch is …read more
Source:: The Mercury News – Entertainment