Jasmine's story

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.

Jasmine told us:

I have been asked by Professor Jim Flett Wilson who leads the Viking Genes Project to write about a life-changing event which happened to me eleven years ago, when I was 64. Up until this time I was well and working full time in the NHS as a Staff Nurse.

I woke one morning to the telephone ringing, got up to answer and during the call I felt lightheaded with a ‘rushing’ noise in my head. And then I collapsed. I had suffered a cardiac arrest! Luckily my sister and daughter were in the house at the time, and by administering CPR were able to resuscitate me and send for an ambulance. 

I was admitted to the Gilbert Bain Hospital, examined and investigated before being diagnosed with Long QT Syndrome, sometimes known as Sudden Cardiac Death Syndrome. This is a genetic misprint in my heart-beat. 

From my local hospital the Gilbert Bain in Lerwick I was transferred to the Aberdeen Royal Infirmary (ARI) where, following tests and investigations, I was fitted with a combined Pacemaker /Defibrillator and prescribed medication to manage the condition. 

Viking II study volunteer Jasmine

Throughout this traumatic period, I was treated with so much care, supported and reassured by everyone who looked after me. This care has continued over the years with regular monitoring and in September of this year I had my implantable cardioverter defibrillator (ICD) updated. 

Initially I took time to become accustomed to the effects of the medication, but over the years have come to accept a slower pace of life. It took a bit more time for me to comprehend this genetic condition. I had inherited a faulty gene which resulted in an electrical abnormality in my heart-beat. 

As a volunteer with the Shetland Family History Society, I had the knowledge and skills needed to study my family tree. It became obvious that I had inherited the gene from my mother’s side of the family as I could see that sudden death had been an issue throughout the previous generations.

As a result of this my immediate family were tested. I have a sister and a brother, daughter with two sons and a son with two daughters. The only member of my family to have inherited the gene was my son, who is now on medication. On the birth of his two girls, testing was done and neither of them has the gene. I then began to think beyond my immediate family to cousins and their families.

Advice from an ex-colleague was to make contact with the Genetic Counsellor in Aberdeen who was interested and willing to help me. She drafted a letter outlining the condition and its potential consequences to send to as many relatives on my mother’s side of the family, suggesting they approach their health care provider to have an ECG. The letter requested that the print-out of the ECG be sent for analysis to the Genetic Department in ARI.

It took me around six weeks to complete my search to find  contact information for my relatives some of whom lived overseas, and I believe following receipt of the letter many of them have followed up on the information laid out by the geneticist 

Long QT is a genetic condition that can be managed. The work being done in this field is saving lives. Professor Wilson and his staff working with Viking Genes are carrying out such exciting and pioneering work, making amazing discoveries that will help prevent early death in families like mine throughout Shetland and further afield.

If you'd like to read more about our research into Long QT Syndrome in Shetland, published in 2019, visit the link below:

Rare Ancestral Variant found in VIKING Health Study