Bobbie Stafford served as the Northern California Alpha-1 Support Group leader from 1992 to 2010, then again from 2012 to 2014. She shared the following personal story with the Alpha-1 community.
I’ve never quite bought the declaration, made by some, that Alpha-1 was “not a rare disease, only rarely diagnosed.” After all, the disorder is included in the list of rare diseases by the National Organization for Rare Disorders (NORD). However, I also never expected to find Alpha-1 to be in the most unexpected people.
At a regional Alpha-1 conference, a few years ago, I met up with a couple who recently attended our Northern California Support Group meetings. The wife of the ZZ husband shared her concerns about her son who had been tested for Alpha-1 and was determined to have the SZ genotype. I attempted to reassure her that lifestyle was as important a determinant to his health as his genetic inheritance of the Alpha-1 S allele. I added that my daughter, too, is an SZ.
We proceeded to walk together to the dining hall and continued our conversations over dinner. Janie told me she had originated from an Italian family with connections to the Healdsburg community. I joked that all of the Italians in Healdsburg (a not insignificant number of the 12,000 or so residents) were related to each other by blood, or marriage, and what was her maiden name?
Well, you could have picked me up off the floor when Janie told me her maiden name was the same as my mother-in-law’s!
Janie recalled my mother-in-law’s many visits to her father (my mother-in-law’s cousin) when Janie was a young girl.
So Janie’s son, a distant cousin of my daughter, shared the same S allele!
To this day, I still feel a small “thrill” in the back of my neck when I think of this event and its implications.
One of our early members of the Northern California Alpha-1 Support Group was Ann Palen, who had attended the very first Alpha-1 National Conference held in Minneapolis. I remember her describing the 60 or so attendees, from all over the country, as cousins, as family, coming together and sharing their experiences and concerns of being in this very small community.
We indeed are a family – some of us closer than we think.