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. While taking part in the Viking Health Study - Shetland (VIKING I), I received a letter with positive feedback on my overall health and thought it was good to know there was nothing to worry about, and that the data collected will benefit future generations and help somebody somewhere. Little did I know the weight it would carry, or how close to home the benefits would extend.Some years later when the opportunity was given to request actionable results, I thought it would be best to know if anything was underlying - folk say "knowledge is power" after all! Soon after registering for this notification, a letter arrived to let me know that the Viking Genes team had found an alteration in the TTN gene. This can increase your risk of developing Dilated Cardiomyopathy which affects the heart muscle. Screening and monitoring are extremely important in order to catch this condition early and to try to prevent any worsening of the condition. Following these findings 'our peerie lass' [my daughter] will have automatic access to genetic testing and, if she has inherited this from me, she could have access to monitoring for signs of the condition ahead of it developing.I now have tablets to take daily to help protect my heart and to keep my heart rate and blood pressure in check, and have regular monitoring at the Gilbert Bain Hospital. I strongly believe that without the genetic screening provided by Viking Genes, my risk factor and condition would not have been detected until it was too late as I had no acute suspicious symptoms. Access to genetic screening has given us a head start against this condition - an advantage we otherwise would not have had - which leads us to believe that this may well have saved both mine and our lass's lives. As the research and incredible work of Professor Wilson and his team at Viking Genes continues to progress, more and more folk are finding themselves in this same boat, which highlights how vital and beneficial a screening roll out would be to the health and lives of so many. If you’d like to read more about this research, visit the link below.Actionable genetic variants in 4,198 Scottish participants from the Orkney and Shetland founder populations and implementation of return of results So we can continue to help people like Jacqueline, please support our fund This article was published on 2025-02-18
