After getting her diagnosis of Chiari Malformation 1, Jenni Lee is now on a mission to raise awareness about the brain disorder.
Since articles of Lee's return to work, she has received dozens of emails and messages from people also battling Chiari.
One of those emails came from Daniel West, who was diagnosed with Chiari in 2016. The 33-year-old had to drop out of Texas State University's graduate school because he was forgetting assignments.
"It was really frustrating, " said West.
Memory loss is just one of several Chiari symptoms. The former 4.0 GPA student was majoring in Developmental Education when his world came crashing down. He is also battling several other Chiari related disorders and is bed ridden most of the day. At night, he can't sleep. He is in pain all day. He said most nights, he cries himself to sleep.
West's only hope now is decompression surgery, which requires cutting out a part of his skull to relieve pressure in his head. West is saving up money for the surgery. He also wants to raise awareness about Chiari.
Lee reached out to Dr. Paolo Bolognese, one of the organizers of the largest international meeting of Chiari experts in the world. The Conference on Chiari 1 Malformation, Syringomyelia, and Related Disorders held July 19 through July 23 in New York brought more than 70 Chiari experts from all the world. Dr. Bolognese said there is a total of about 90 Chiari experts worldwide.
Right now, he said experts believe there are 2.5 million Americans who have been diagnosed with Chiari Malformation 1. Chiari is a brain disorder where the bottom part of the brain, called the cerebellum, descends out of the skull and crowds the spinal cord. This puts pressure on both the brain and spine and causes many symptoms. Dr. Bolognese said there are as many as 85 symptoms associated with Chiari, like pressure headaches, double vision, nausea and muscle weakness.
One of the main topics discussed at the conference was the real possibility that how Chiari Malformations are classified, will change. Dr. Bolognese said that will ultimately mean more people getting the Chiari diagnosis.
"About 10 years ago, people thought that the prevalence of Chiari was 1 in 1000...The more diagnoses, the more symptoms we're dealing with this, the more it's becoming evident that this 1 to 1000 is extremely conservative," said Dr. Bolognese.
He also said the experts talked about changing the name of the disorder from Chiari Malformation to Chiari Anomaly.
"Right now Chiari is defined as a malformation. A malformation is something that every time it is present, it is making you sick. The proposed new name is anomaly. An anomaly is something like a big nose. Sometimes it looks a bit funny but it's not particularly a problem, other times it can be a medical problem. So it looks like the Chiari Anomaly not the malformation because the more and more we study patients and their families, and there is a 22 percent part that there is more than one case running in their family, the more that we find people who are asymptomatic."
READ MORE | Chiari Malformation: A common yet rarely discussed brain disorder
As a result, Dr. Bolognese said experts expect a lot more people being diagnosed with Chiari in the future.
He added that dozens of Chiari experts have also agreed to redefine Chiari Malformation 1.
"Somebody, we're still having, struggling to identify who was the first guy who made up the rule. Somebody who was a radiologist, not a clinician, not a surgeon, not a neurologist, came up with the idea that if you have 5 mm herniation and beyond that, you have Chiari One Malformation. Anybody less than 5 does not have that," he explained.
Dr. Bolognese said the group plans to abolish the 5 mm rule which would have an economic impact.
"The 5 mm rule can give the insurance (companies) the grounds for denial for proposed surgery when there is a herniation that is shorter than 5 mm," said Dr. Bolognese.
The Board of Directors and the Medical Advisory Board of the American Syringomyelia and Chiari Alliance Project (ASAP) sponsored the conference.
Patrice Schaublin is the CEO of ASAP, the oldest Chiari related non-profit in the country.
She said one of the biggest challenges is not only educating the public about Chiari but doctors as well.
"You know it's funny, we have this meeting and neurosurgeons come but we don't see any neurologists coming. There is one or two but the neurologists really need to be attending this and learning more about it because the primary takes the problem and sends it to the neurologist, and if the neurologist is not aware, where are we going from there?"
To find out more information about ASAP, just visit their website at ASAP.org.
If you think you have Chiari, Dr. Bolognese suggests seeking out specialists at one of the 30 to 35 Chiari Centers around the country. He also said to get at least two opinions from these expert neurosurgeons.
Lastly, if you would like to help West pay for his surgery, go to his You Caring Page here.