Digging through my Irish ancestry to look for clues of cystic fibrosis
A brush with death and genetic testing results prompt an intriguing quest
Since my recovery from a life-threatening sepsis attack on my gallbladder and appendix in 2019, I’ve slowly begun to put together my family’s history, going back to Ireland.
The attack triggered an urgency within me to get the full picture of who I am and who my family is and was. I want to leave this information for my family in the future. I nearly died during the whole ordeal and wanted to do something positive that was bigger than me.
It’s been a tedious project, and I’ve had a lot of help along the way from older family members who share my interest in painting a full picture of the family on both sides.
My interest, however, wasn’t prompted by a love of history. I want to try, as hard as I can, to figure out if my ancestors had cystic fibrosis (CF).
Following a theory
My full Irish ancestry was confirmed last year by a genetics testing company. The kit was a gift from my wife for Valentine’s Day last year because she knows how interested I am in understanding my family’s history. We both also wanted to know if I am fully Irish, which I had believed for most of my life.
Irish genetics and CF are intertwined. Multiple studies point out that the Republic of Ireland has the highest incidence of CF in the world. When I look at my family tree, I have my suspicions about who in previous generations had CF.
My great-grandfather, for example, who is the father of my maternal grandfather, had nine siblings, but only he and two of his siblings lived long lives. The others died within a year of being born.
Of course, infant mortality rates in the 19th century were much higher than they are today. In England, where my great-grandfather was born, about 140-160 infants per thousand were dying at the time before their first birthday, according to the University of Cambridge. When I was born in 1992, the infant mortality rate in the United States was 8.5 deaths per 1,000 births.
While the living conditions in the 1800s were undoubtedly tough, I suspect they don’t entirely explain how seven children in a single family didn’t make it to their second birthday. CF wasn’t described as a medical condition until 1938, and my great-grandfather died in 1934, so he had no way of knowing about the disease.
As I look through the results of my genetic ancestry tests and try to connect the pieces of who is who and where they belong on the family tree, I’m trying to figure out who had CF. This would go a long way in helping me not feel like an outlier in my family.
Here’s to hoping we can solve this mystery by tracing our genes!
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Very interesting Will.Great research.Love Tony
Hi Will! This article was such an eye opener! May your search go on and give you all the answers you're satisfied with. Maybe you'll be able to make important strides towards a cure. I have all the faith in the world in you. God bless your drive and curiosity. I love you. Helen
I'm Irish as well with CF and I've always wondered if all those years of mining in Ireland caused the mutations. I have read that environmental factors can cause the genes to mutate, so it's def plausible.
Interesting! Good luck in your quest!
I, too, have an Irish background. My great grandfather was from Ireland. My parents didn't know they were carriers nor do they know of any relatives with CF. I sometimes wonder if my gene was somehow a spontaneous mutation ;)
Gisele F Lapointe
I am not Irish. I an Canadian, born in the province of Quebec. My ancestors as well as my husband's came from Northern France, arrived in Quebec in the middle of the seventeenth century. Like you, I have read that Ireland has the highest incidence of CF. Ireland is not far from Brittany in France, hence of Celtic origin. Having done my genealogy in the last couple of years I found that my CF mutation came from my father whose ancestors came from Dieppe in Normandy, France. When we learned that our daughter, aged 19, had CF, we started searching where it came from, and my husband could not recall having heard of any such disease in his family, yet we later discovered, after he was tested, that he had a very rare mutation. Did it come from his French ancestors or from his great grandfather who had married an Irish girl in the eighteenth century after the Irish migration in Quebec. We will never know, we can only speculate. BTW, our daughter lived to age 43 ,after enjoying a pretty "normal life", getting, married, having three children, to finally receiving a two-lobe transplant, one from her brother, the other from her husband, which afforded her an extra two years. I am very confident that this disease will be conquered in the very near future as I read that the number of new cases has fallen every year in both Canada and the US in the last 20 years.
Good luck to you.
My grandson has CF. My husband's family are CF carriers - we found out via DNA testing as well. His grandmother had one daughter who was born in 1923 and died 1924...I was able to locate a death certificate online for her. "chronic lung infection and chronic intestinal infection" was the cause of death. Obviously CF. She was the first baby of the family and his grandmother went on to have 6 more children who all lived to adulthood. Obviously my husband's father was a carrier. There are no other Cfers that we know of. There is some Irish descent - both in this family and my daughter-in-law's family. If you could locate death certificates for these children, it would possibly be informative for your research. It might be difficult though to find from the 1800's. Good Luck with your research.