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Immune Systems


Immune Systems—Barbara Ponders Genetics

Immune Systems — Barbara Ponders Genetics

Medical researchers love disease clusters. My Italian-American family are one. Among my mother and her ten siblings and their roughly two-dozen children, there have been multiple cases of Cooley’s Anemia, Rheumatoid Arthritis (RA), Systemic Lupus Erythematosus (SLE) and a host of other auto-immune diseases. There was little known about all of these diseases in the 1960s. 

I was about sixteen, I think, when one of my uncles ended up in Columbia Presbyterian severely ill and was eventually diagnosed with Lupus. He told his RA/SLE specialist that one of his sisters also had it and suffered with Cooley’s Anemia. That brilliant young doctor found the positive in my uncle’s sad story and asked him if his parents, brothers and sisters and their children would participate in an RA/SLE research project . 

Everyone in the family said yes. If the research would help, they’d schlep in to upper Manhattan and give their blood gladly. I was excited. Yippee! A science experiment and a trip to Manhattan, well, at least to a parking garage and hospital diagnostic lab. 

We set a date and time. We all showed up, encamped in the hospital waiting room and suddenly it was a party room — about thirty of us drinking sodas and coffee and talking about this and that and our fear of needles and bad veins at a volume only Neapolitans can reach without even trying.

One-by-one our names were called, and we each marched into the doctors’ cubicles and rolled up our sleeves, sat for interviews about medical symptoms and histories, signed paperwork and learned that some of our blood would be used immediately and some of it frozen for ongoing study. And when it was over, of course, we went out for Italian food. 

One of my uncles knew a guy who knew a local place that could fit all of us for dinner. We ate. We compared the restaurant’s meatballs to my grandmother’s meatballs, the gold standard against which all of her daughters’ and daughters-in-law’s meatballs were measured, talked about suspicious rashes, aches and pains we were afraid to tell anyone we had, bone-weariness, swelling and Lupus treatments and their side-effects. 

Between the crunching of our cannolis, an uncle asked the assembled group, Did the doctor tell you?” Everybody stopped chewing, and mouths full chimed, What?” That uncle nodded and cracked a crooked grin, The doctor told me (heavy emphasis on the me) that our family was the largest family cohort to participate in their research.” Pride, not sadness, that we were bound by two potentially deadly diseases buzzed around the restaurant, even the kids were smiling crooked, ironic grins. If we were wearing suspenders, we might have snapped them. We mattered. We were more than poor immigrants who ate foods with names real Americans couldn’t pronounce and cheeses they said smelled like toe-jam, who were assumed to be in the Mafia or unhinged because we talked with our hands. We were medical celebrities.

Epilogue: Over fifty years later, researchers are still using and gaining insights from the blood donated by my family. Some solace, some hope for the future. Further proof of my Italian-American family’s exceptionalism? I’d like to think so.