A British woman with a rare condition that causes her brain to “slip” into her spine says she was collapsing up to 20 times a day — temporarily leaving her without vision or hearing.
Jennifer Sullivan first began passing out randomly back in 2010, while she was living in London in her early 20s.
Sullivan, who is now 35, says the fainting spells increased in frequency and intensity, but doctors were dumbfounded as to what was the cause.
“I was passed on to every hospital, but no one could diagnose me,” she told My London in an interview. “It was terrifying that no one could find what was wrong.”
In addition to the random collapses, Sullivan began experiencing extreme headaches, saying it felt like someone was “squeezing” her brain, making her “want to rip her own head off.”
After two years of tests, a doctor finally diagnosed the young Brit with Chiari malformation in 2012.
The rare condition occurs when the brain tissue extends into the spinal canal. according to the Mayo Clinic, it is more common in people whose skulls are small or misshapen. The skull subsequently presses on the brain and forces it downward.
In the decade since her diagnosis, Sullivan has undergone three brain surgeries. One five-hour surgery involved doctors cutting out a piece of her brain near her neck.
In 2018, Sullivan suddenly lost all feeling below her chest, due to nerve damage. Her brain — which has been operated on multiple times — had stopped being able to read messages from her nerves.
Sullivan feared she’d be wheelchair-bound for the rest of her life, but reflexology massages helped her bring full feeling back to her body.
“I’m so thankful to have had the brain surgeries, but they left me dealing with a condition so debilitating and I think reflexology got me out of that,” she stated.
Despite her health battle, Sullivan has managed to get married and keep her career.
“I will live with Chiari malformation for the rest of my life, but I know my body and my limitations,” she told My London.
“People underestimate how much power you can have over your own situation. I want people to understand they don’t have to accept what they’re told, you can improve your own life.”