Volunteer Stories

Elaine, who is from Shetland, 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.

Stuart Flett has neuromyotonia, a rare neuromuscular disorder causing continuous muscle‑fibre overactivity. His childhood symptoms were misdiagnosed until specialist tests confirmed the condition. When his daughter Chloe developed symptoms, her neuromuscular research connected the family with Professor Jim Wilson and the Viking Genes study to identify the genetic cause and improve diagnosis and treatment.

John is an off-shore worker from Lewis. He received a letter from Professor Wilson in January 2025, telling him that he has an actionable result in the HFE gene, which can cause the iron-overload disease haemochromatosis.

Alan from Skye, an engineering manager, was looking forward to semi-retirement, working the family croft, but declining health cast a shadow over his future plans. Then Alan received a letter from Professor Wilson, telling him that he has an actionable result in the HFE gene, which can cause the iron-overload disease haemochromatosis.

Mairi, from Harris, had no symptoms at all. As part of the Viking Genes return of results programme that started in 2023, Mairi received a letter from Professor Jim Flett Wilson, telling her she has an actionable finding in the HFE gene, which can cause the iron-overload disease haemochromatosis.

Kenneth is an NHS health practitioner on the Isle of Benbecula. He received a letter from Professor Wilson in January 2025, telling him that he has an actionable result in the HFE gene, which can cause the iron-overload disease haemochromatosis.

Linda from Orkney had not felt well for a long time. As part of the Viking Genes return of results programme that started in 2023, Linda found out that she has an actionable variant in the haemochromatosis (HFE) gene.

In March 2008 Hunter was diagnosed with Idiopathic Dilated Cardiomyopathy, a disease that causes weakening of the heart muscle. The cause wasn't certain, but a letter in 2024 from Prof Jim Flett Wilson of Viking Genes revealed that Hunter had inherited a variant in the TTN gene, which put him at risk of developing dilated cardiomyopathy.

John Arthur is a volunteer in VIKING I. His powerful story started with a Viking Genes return of results letter from Professor Jim Flett Wilson, telling John Arthur he is a carrier of the Whalsay BRCA2 variant, which can cause breast and prostate cancer in men.

Jacqueline worked as an administrator with us on the VIKING I study from 2013-2015, but is also a volunteer. As part of the Viking Genes return of results programme, Jacqueline found out in 2024 that she was a carrier of a TTN gene variant, which can increase the risk of developing the heart condition Dilated Cardiomyopathy.

Laura started to develop life-changing symptoms that led to the diagnosed of a rare genetic disorder called Wilson disease that requires actionable variants in both copies of her ATP7B gene (one from her mother and one from her father) for the disease to become active. Laura is keen to stress that screening will help identify carriers and has taken positive action by becoming a fundraiser for Viking Genes.

In 2013 Jasmine had a a life-changing event caused by Long QT Syndrome, which is an inherited heart problem that affects how your heart beats. Jasmine later found out she is a carrier of a LQTS variant and is keen to stress that screening will help prevent early death by finding carriers before they become ill.

Christine has lived her whole life in Shetland. She is a volunteer in VIKING I. As part of the Viking Genes return of results programme, Christine found out in 2023 that she was a carrier of the Whalsay BRCA2 variant, which can cause breast and ovarian cancer.

Ingrid is a Viking Health Study - Shetland volunteer. When she heard we were looking for new volunteers for VIKING II, she shared her story, showing the benefits of receiving actionable genetic results.

Kiera is a volunteer in our study, but she also spent some time working with us! Read about why she chose to be so actively involved here.

Dot came to visit us on Friday 13th March 2020. It might be an unlucky day for some but she enjoyed her visit and shares her experience here.

Andrea was originally born in Edinburgh and her family has a very interesting history related to our studies. Read more here.

Garry has two grandparents from Orkney and, with the help of relatives, is discovering more about his family tree. Read his story here.

Heather was born in Canada to a father from Orkney, whose parents were both Orcadian as well. When she heard she heard about VIKING II, she chose to take part. Read her story here.

Helga and Ingrid were born and raised in Scotland and now live in New Zealand. Read all about their history and travels here.

Lena has a long Shetlandic family history. She has since moved away from the islands but believes they never leave you. Read her story here.

Dawn was born in The Midlands, in the UK, but is proud to have a heritage from Orkney. Read more about why she got involved in the study here.

Born in Edinburgh to an Orcadian Mum, Fiona was inspired to join the study after watching Jim's lecture in Orkney. Read her story here.

Sonya is born and bred Orcadian but and now lives in Aberdeen. You can read more about her story here.