Doctors have been surprised to find Alpha-1 in Kathleen Griffin’s family.
Griffin is African-American — although her family history, like that of many, proves it’s much more complicated.
When her sister, Mary Rogers, was diagnosed with Alpha-1 after receiving a liver transplant in 2008, the shocked doctor “said ‘Alpha-1 is normally associated with Europeans,’ ” Rogers recalls. “So some of the doctors didn’t think you have it because you’re African-American.”
Although the doctors saw Rogers as an African-American, “we see her more as a mixture of everything,” Griffin says. Griffin and Rogers have 12 siblings, all born to the same mother, but to two different fathers.
Their family goes back almost a century in the town of Burlington, New Jersey, where most of the big family still lives.
Their grandmother, Sarah Grooms, who was black, gave birth at age 17 to Mary Elizabeth Grooms in 1911. The baby was fair-skinned and had straight hair. The family doesn’t know who their grandfather was.
Mary Elizabeth Grooms went on to marry a white, Italian man and the couple had four light-skinned children. Olga Catlett, one of her children, had chronic obstructive pulmonary disease (COPD) although she never smoked — but did not have Alpha-1. She died on April 9, 2011.
Mary Elizabeth later married a second time to an African-American and gave birth to Mary Rogers, Kathleen Griffin and six other children. Griffin is an Alpha-1 carrier, as is her “baby brother,” Michael O’Farrow, who doesn’t have lung or liver symptoms.
Recently, Kathleen’s older sister Joyce was diagnosed with Alpha-1-related emphysema. Every Friday she gets Alpha-1 infusions. Again, the doctor expressed shock.
“She has had breathing problems for a bit [and] the doctor recognized it right away when he looked at her x-rays,” Griffin says.
Joyce’s twin, Joan, had cirrhosis of the liver, although she didn’t drink. She died on Christmas 2012 after her organs shut down. She was never tested, so the family doesn’t know for sure if she had Alpha-1.
Since the family is filled with Alpha-1, Griffin has encouraged her children to get tested.
Her 45-year-old son was a smoker, has COPD and has had breathing trouble so severe it required hospitalization. He also has had H1N1 flu and pneumonia. A serious pressure ulcer he’s had for six months is finally healing, Griffin says.
Although he has not been tested, Joyce has testing kits and will be testing Kathleen’s son, along with their sisters Carol and Yvonne, “who are the last of the siblings that have not been tested,” says Griffin.
Because Alpha-1 has had such an impact on them, the family has tried to raise awareness of it in the African-American community.
“We find it so interesting that our family has been hit with this disease since it’s of European descent,” said Griffin. “[Yet] I have not heard of any other [African-American] family that this has happened to.”
Rogers says the doctors’ reactions showed a common misconception in America.
“There are many Caucasians walking around thinking they are pure Caucasian and they’re not,” she says. “Some of their grandparents were slaves. When the doctor said that, I just shrugged it off because most of us, black or white, are not pure, and that’s just the way it is.”
Find out how to get tested for Alpha-1 here.