Rachel Burdick: AVM survivor and advocate

Junior+Rachel+Burdick+proudly+presents+the+official+proclamation+from+the+City+of+Burlingame+recognizing+the+last+day+of+February+as+Rare+Disease+Day.

Photo courtesy of Rachel Burdick

Junior Rachel Burdick proudly presents the official proclamation from the City of Burlingame recognizing the last day of February as Rare Disease Day.

Lexi Goldstein, Copy Editor

Standing on Crissy Field, breathing in the crisp autumn breeze, junior Rachel Burdick geared up for her first Annual Aneurysm and Arteriovenous Malformation (AVM) Awareness Walk on May 6, 2016. Just a year before, she was rolling around on the ground during gymnastics practice in excruciating, ineffable pain. Dazed, confused and vomiting, Burdick needed immediate help for her mystery affliction. After emergency neurosurgery via gamma knife radiation and a two-week induced coma, the pieces were put together — it was a brain bleed from an AVM. 

That was nearly five years ago. Now, Burdick focuses on living a normal life and advocating for aneurysm and AVM-related causes. Although Burdick’s battle scars are concealed by a full head of hair, eight titanium plates in her skull and restricted peripheral vision serve as a reminder of her bravery. Following countless MRIs, angiograms and radiation treatments, Burdick is AVM-free. However, she is still at high risk of internal bleeding. 

“So it’s kind of like a probability game, like will it leave or not, and I know it’s a lot of pressure and worrying,” Burdick said. 

AVM is the malformation of blood vessels between an artery and a vein, and when tangled, it can cause stress on blood vessels, leading to hemorrhage and internal bleeding. Approximately 18 out of every 100,000 people have AVM, classifying it as a rare disease. 

Burdick works as a youth ambassador with The Aneurysm and AVM Foundation (TAAF) and recently submitted a proclamation to the City of Burlingame for the last day of February to be recognized annually as Rare Disease Day. This recognition will boost community knowledge on rare diseases and advocate for better treatment of these diseases. 

With her year of experience working with TAAF, Burdick has contributed to numerous awareness and support programs for people with AVM and aneurysms. 

“[TAAF] opened up this ambassador program for youth, and what I do with them is I host a yearly fundraiser,” Burdick said. “We’ve also launched a pen-pal program for different hospitals across the country — if you’ve had an AVM or aneurysm, you can contact us and we’ll hook you up with a pen-pal.”

Currently, Bay Area hospitals dominate the geographic demographic for the pen-pal program, with four-to-five hospitals participating. Pen-pal programs are Covid-friendly, but the annual awareness walk was postponed to this fall because of COVID-19 safety concerns. 

Burdick’s personal experience with AVM motivates her to help others have an easier time battling the disorder. 

“I just want to help spread awareness and raise money for the cause, so they could possibly come up with better treatment or a way to detect [AVM] before they bleed,” Burdick said.