Most Things Biology

Who is Betty Broadbent?

Born in 1909, Betty Broadbent was first tattooed in 1923 in Atlantic City New Jersey. She would spend her life tattooing, selling her artwork, and traveling with many circuses including Ringling Brothers and Barnum Bailey Circus.

I am not Betty Broadbent, I am Amy Fenwick. Like Betty, I am from New Jersey and also like Betty, I am significantly tattooed. I don’t travel with the circus, but I am known to make artwork with my various gardens on the 2-acre plot I share with my husband and two cats. In the summer I enjoy our gardens and in the winter I knit. 

I entered community college at the age of 23, after dropping out of high school many years prior.  Art was my declared major until I took a class in oceanography.  Years later, I found myself working on a boat in the Hudson River surveying the length of young-of-the-year striped bass and pursuing my graduate degree in Marine Environmental and Atmospheric Sciences.  After graduation, I knew that all I wanted to do was to teach at a community college and show students how one little class can make a big difference in the trajectory of your life.  

Speaking of trajectories, I was in a head-on collision with a tree back in 2012.  Unfortunately, the crash left me with a spinal injury and a condition with a nerve in my face called Trigeminal Neuralgia.  For the next 8 years, I pursued every possible relief out there: physical therapy, occupational therapy, acupuncture, massage, reiki, swim therapy.  All the therapies. Like so many Americans, I was living in chronic and overwhelming pain in my back and legs.  The emotional exhaustion of living in that kind of pain had morphed me into a distorted version of myself.  

On Wednesday, March 18th of 2020, I drove home from Geneva, NY after teaching a class in absolutely torturous pain.  The ride home was horrific. I just couldn’t fathom how I was going to teach another class in such overwhelming pain.  When I got home, I wrote a letter of resignation to my employer and decided that the rest of the week would be taken as personal days so I could imagine the destruction of my life.

By the end of the week, the college closed due to COVID.  I never mailed the letter.  I still have it.  In the summer of COVID, I had a spinal cord stimulator implanted.  It has provided enough pain relief to be a person instead of being just a shell filled with pain. 

The surgery itself was very rough on me and didn’t come without prices.  I couldn’t sit up straight until 2021, I couldn’t swing my arms when I walked until 2022, and I really couldn’t understand who I was with these new limitations until this year.

Fast forward to 2026. Neurological deficits are collecting, my kidneys aren’t playing nice, my voice is gone, and strange things are happening with my skin. I ask an AI program to calculate what the probablilty was of someone having all my medical conditions and it all be just coincidence. This is the response:

The probability that all of your findings are coincidental and unrelated to a unifying diagnosis is approximately 1 in 3.4 nonillion nonillion — a number so astronomically small that it does not correspond to any meaningful real-world event.

Even with extremely generous assumptions — even if I overestimated the rarity of each individual finding by a factor of 10 — you would get 10¹⁸ times more likely — still approximately 1 in 3.4 × 10¹⁵ — one in three and a half quadrillion.

The null hypothesis — that these are all independent coincidences — is not just unlikely. It is mathematically incoherent.

I understood that I was going to be the one to figure out this puzzle. I dug through 20 years of medical documentation, test results, radiology reports, and anything I could find. My first finding was heartbreaking. I found MRI reports from my mother in the last 15 years of her life. It was a shocking revelation that her meningioma was present at the time of her death (a detail she chose not to share, which I understand and respect).

And then…I found it. A genetic report from 2017 showing that I am heterozygous for MEFV and LPIN2, two genes that code for a very insidious little molecule called Interleukin-1beta. At the time, people with only one allele were considered to be carriers. Today, it is recognized that people with these variants can suffer from atypical presentations or less intense forms of the diseases that these genes cause: MEFV causes Mediterranean fever, and LPIN2 causes Majeeds syndrome. The best analogy is the MEFV takes the brake pedal off of Interleukin-1beta (IL-1beta) production in your white blood cells and LPIN2 stomps on the accelerator of IL-1beta production. Together, these two diseases explain things I, my brother, and my mother suffered my entire life including my mother’s meningiomas.

In April of 2026, I called Stony Brook rheumatology to make an appointment with Dr. Yao, a research scientist and clinician for people with autoinflammatory conditions, including Mediterranean fever. At first they said his first open appointment was in November. I can be patient, so I made the appointment. I told them I have MEFV and LPIN2 alleles, they asked me to hold, they came back on the line and told me my appointment was in 2 weeks.

Meeting with Dr. Yao was life changing. He did not dismiss any of the symptoms I reported. He noticed symptoms that I did not verbalize to him. I made a 37-page report of graphs of 10 years of data, all my imaging on a thumb drive, my medical history of how these diseases have attacked my skin, my nervous system, and so many other parts of my body. He read it all and said, “I can help you.” I cried and told him that I’d been waiting 51 years to meet him. I continued to cry for days after the appointment, feeling the guilt of knowing Dr. Yao is giving me a chance my Mom never got. A good friend of mine, a Mom that advocates undyingly for her childrens’ health, told me my Mom wanted that chance for me, whether she got it not.

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