Elaine has an alteration to a gene called KCNQ1, which increases the chance of having a heart condition called long QT syndrome. She found out after receiving a letter from Prof Jim Flett Wilson in 2024. Her result led to seven positive family members being found, who needed to be checked by a cardiologist. Back in 2010 I took part in the original Viking Genes project and was surprised in the beginning of 2024 to get a letter from Professor Wilson saying that they’d gotten funding to look into the health side of volunteer genes. I was asked if I would like to take part and I thought why not. Then, to my surprise I got a letter in April 2024 to say that I may have an alteration to a gene called KCNQ1 which increases the chance of having a heart condition called long QT syndrome. He went on to explain that some may never have any symptoms from it, but it can cause irregular heart rhythms, which can be life threatening. If it is detected it can be treated with medication, or occasionally surgery, therefore it was a very treatable condition. So, I called the number Professor Wilson gave me in the letter. This was to the team at the NHS Grampian Clinical Genetics Service in Aberdeen and explained why I was calling. Shortly afterwards I was contacted by Annie Johnes, who guided me through the questionnaires, video interview and subsequent cardiology appointments at the Gilbert Bain Hospital. It turns out I have the gene variant, but thankfully no symptoms, I do however have small ectopic activities (extra beats) that I can get medication for if they bother me. Annie suggested that my Mam, sister and daughters should all take the test to see if (a) the gene variant came through Mam, and (b) if my family also carried the variant. Elaine and granddaughter Elle It was discovered that Mam did not have the variant, so it either came from my father’s side (he had a heart condition, we're not entirely sure what it was, but it was discovered when he was called up for National Service in the 1950’s) or it was a variant that arose within myself. It turned out though that my sister also has the variant, so we are taking it that it came through Dad’s side. My sister not only has the gene variant but she has heart symptoms and one of her daughters also has the variant, she still has to find out if she has the symptoms, and the other is mercifully free of it!However, it’s a different story for my offspring. Both my daughters have the variant and the heart symptoms. My elder daughter’s daughter, aged 4, has the variant and is waiting on an appointment with the cardiologist in Aberdeen to see if she has the symptoms. My younger daughter’s son and daughter, aged 2 years and 4 months, both have the gene variant and symptoms, so they are all on medication. Her younger child was tested through the umbilical cord at her birth, just amazing! It is normally a blood test but with the toddlers it was a saliva test. It has been a bit upsetting for the family, especially the grandchildren having to take medication at such a young age, but if it helps to protect them through life then it’s worth it. My younger daughter was told that young boys are very susceptible to the symptoms. Precautions we all have to take are to avoid sudden shocks, cold water swimming and be wary of certain medications. Dad’s other side of the family have been informed, so they can make the decision to take the test if they wish. Viking Genes is a life-saving project for sure. In my own family, my one result led to seven positive family members being found, who needed to be checked by a cardiologist. So we can continue to help people like Elaine, please support our fund This article was published on 2026-01-22
