BAF Changemaker: Katherine Long

Brain aneurysm survivor, Katherine Long, originally from Del Rio, Texas, has been involved with the BAF since before she even knew she had an aneurysm. Since then, she has joined events, raised funds and awareness, and advocated on Capitol Hill for increased research funding. Katherine is also the CEO & Founder of Exploring Paths™ Publishing. She has partnered with the BAF to bring a set of gratitude and reflection journals for survivors and caregivers. Half of the proceeds from the sale of the books are donated to the BAF.

You may learn more about the journals and purchase them here.

Tell us a little about your connection with brain aneurysms.

I am a very fortunate survivor; I had an aneurysm that was growing in a fatal location that was caught and surgically resolved ahead of rupture. I was misdiagnosed for about a year until I advocated for myself to get the proper scan. A story we hear all too much.

After the surgery, my doctor told me he was happy that I had had the procedure as the aneurysm was in a fatal location and was growing. It had grown to the point where I wouldn’t have had a choice in having the procedure or not, and at some point, it would have by all accounts ruptured and taken my life.

Sadly, almost a year after my procedure, my cousin Monique collapsed at home and was rushed to the hospital, unconscious, where she died from a ruptured brain aneurysm.  Monique was only 48 years old, and her son, her only child, was getting married in just three months. 

Since Monique’s tragic death, my mother and one of my aunts have been diagnosed with brain aneurysms. Both are being regularly monitored. 

When did you first learn about the BAF?

I first learned about the Brain Aneurysm Foundation in 2014 by chance through the TeamCindy 5K Run for Research. I joined last-minute to support Lauren Sherwin in a 5K run honoring her sister Cindy, who had passed away. Upon arrival, I learned the event was dedicated to brain aneurysm awareness and the BAF, and that Cindy had lost her life to a ruptured aneurysm. There were neurosurgeons and members the Foundation on hand speaking about possible symptoms that you can have.

As I was running the course that day, I thought about the severe migraines I had been experiencing since I was 18. I also thought about the strange tingling and slight drooping in my face that I had experienced over the previous year that had sent me to neurologists, who either said nothing is wrong with me or diagnosed me following MRIs with atypical trigeminal neuralgia. The following Monday, I went back to my doctor and said, “Can we please run this one last test?” Thankfully, he agreed.

Why is it important to be an advocate for the BAF community?

Advocating for the BAF community is vital to me because advocacy and awareness saved my life. I’m here today thanks to Team Cindy, the BAF, and learning about MRA/CTA, which solved a puzzle that stumped multiple neurologists.

It’s also crucial for me to continue this work because current guidelines around aneurysms need to change. Testing is only recommended or covered by insurance if there are two or more family members with aneurysms. I was the first in my family, and Monique, sadly, was the second. She had been complaining of severe headaches but was having a hard time getting a scan covered by her insurance.

Monique and so many others should still be with us today.

My cousin, one of Monique’s sisters, and I shared our experiences at the BAF Advocacy Day on Capitol Hill.  It was emotionally challenging for both of us, though essential to do to help others and perhaps spare another family from suffering such a terrible and needless tragedy.