Playing Bingo to Support My Friend With Variegate Porphyria
Growing up, I loved playing bingo with both of my grandmas. The large hall held rows of tables filled with players trying their luck. I would eagerly play a couple of cards while each of my grandmas somehow managed to stay on top of dozens of them while simultaneously chatting with their neighbors.
On Sunday, May 1, I was delighted to have another opportunity to shout “Bingo!” — but with a bigger goal than winning.
The American Legion 226 in Edgewater, Maryland, opened its doors to welcome the friends and family of my friend Katherine Cruz for a basket bingo fundraiser to help her with porphyria-related expenses. As a mom of a child who also lives with porphyria, I was delighted to be there to support her.
Katherine lives with variegate porphyria (VP), one of the four types of acute hepatic porphyria (AHP). Living with a rare disease can be prohibitively expensive, and VP is no different. There are monthly treatments, doctor appointments, medical care, and prescriptions — not to mention regular bills and the costs of managing a family.
Hallmark symptoms of an acute VP attack include debilitating abdominal pain, nausea, vomiting, brain fog, and weakness caused by an accumulation of the neurotoxins aminolevulinic acid and porphobilinogen. It is also one of two types of AHP that can have phototoxicity, causing blistering on sun exposure.
The community fundraiser attracted over 200 bingo enthusiasts who banded together over a game of chance to help relieve the financial burden Katherine faces while living with variegate porphyria.
Support was in the air! Katherine’s mom, Sandy, proudly wore a “Mom of a Warrior” T-shirt, while Katherine’s husband, Julio, sported the poignant words “In this family, nobody suffers alone.”
Katherine made buttons and magnets emblazoned with “Care for Rare.” A barbecue meal donated by a local restaurant filled bellies as the festivities began. The hall was decorated with purple-topped tables, balloons, and custom handouts explaining VP, and a feeling of excitement filled the space as we learned about ways to participate in the event.
Sandra Levi, the doctor who diagnosed Katherine, welcomed the crowd, sharing the story of Katherine’s diagnostic journey and her path to treatment.
Levi said, “Shortly after her first visit with me, she went to the emergency room multiple times keeling over in abdominal pain, which, when I asked on a scale of 1 to 10 how she rates her pain, she stated it was a 27!”
AHP is diagnosed through specific biochemical labs. Lab orders are readily available, but they must be requested specifically. A physician, or a motivated patient, needs to consider the possibility of porphyria and request the appropriate testing.
Levi spent hours studying porphyria on behalf of Katherine. She connected directly with a porphyria expert and immersed herself in managing a challenging patient. She believed Katherine’s pain was real. So many patients are cast aside because the disease is mostly invisible, even though the pain can measure way beyond any standard scale.
Many acute porphyria patients related to Katherine’s story of undergoing years of pain, failed diagnostic testing, and trips to the emergency room that revealed no reason for her suffering. One time, Levi arrived on the scene just in time to halt an exploratory surgery that would’ve left Katherine further battle-scarred. She ordered the labs needed for a variegate porphyria diagnosis (though it took four tries for them to be completed correctly) and stuck by Katherine through the entire process.
At the event, I had the opportunity to introduce the United Porphryias Association, which I serve as president, and talk about the support our patient advocacy organization offers. Looking at the crowd, it was a joy to see a team of supporters ready to dig deep to support Katherine — especially after the isolation of the COVID-19 pandemic. This brave, beautiful soul has suffered far more than one person should.
Armed with ink-filled daubers to mark the bingo sheets, players followed along as the caller belted out numbers of balls as they rolled out of the bin. Between the games, the raffle, and the silent auction, there were plenty of options to win. Event organizers also created extra donation options to bolster giving.
In the final bingo game of the day, we needed to form the letter “P” for porphyria. I held my breath in anticipation when I was two numbers away from a win, but someone from the back of the room proudly called out “bingo” and walked away with the final prize.
I walked away instead with a heart full of appreciation for the support Katherine received. I hope it lightens the burden of variegate porphyria. I know she will never be alone on this journey or give up hope.
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.