The Girl Who Started It All
When I was nine months old, I fell over at a baby gym session. I passed out and my whole body went stiff. Naturally, my parents were terrified. For sixty awful seconds my poor mum, who witnessed it happen, thought I was dying. And weirdly she was right. My parents hoped it was just a one-time thing, but it was not long before I was passing out daily. I’d go deathly white, my lips would turn blue, I’d stop breathing and my legs would jerk. The scariest thing for my parents was not being able to feel my heartbeat. Fortunately, it would usually start again after about thirty seconds, but I could be unconscious for anything from a few minutes to, on some occasions, over an hour.
My episodes became more frequent, sometimes occurring as many as eight times a day. My parents were desperate to get a diagnosis. My mother spoke to doctors who only told that I would grow out of it and that the attacks were merely temper tantrums. She even wrote to every cardiologist in the United Kingdom, but it was not until I was three and half years old that I finally received a diagnosis.
We went to Glasgow, Scotland to see Professor John Stephenson, a specialist at the Royal Hospital for Sick Children. Professor Stephenson was one of the many cardiologists that my mum had written, to perseverance paid off. He diagnosed me with Reflex Anoxic Seizures (RAS), which basically means the nerve that tells my heart to beat is ultra-sensitive. Unexpected shocks like a fall or loud noise would cause my heart to stop. It could be something so simple and minor, even a ‘pleasant’ surprise, and my heart would stop beating.
My body would then automatically release a chemical to restart it. My brain was never starved of oxygen for long enough to cause damage, but there was a risk I could fall and hurt myself when I had an attack. From that point on I always had to be supervised. At school, in the playground, on field trips, even during playdates. Either my mum or my dad had to be present, in the event that I should have an attack.
Due to the lack of awareness and support for my condition, in 1993 my mother, Trudie Lobban, started Syncope Trust and Reflex Anoxic Seizures (STARS) – working together with individuals, families, and medical professionals to offer support and information on syncope and reflex anoxic seizures. It was actually Professor Stephenson whom asked her to start a ‘small support group’ for other parents, so that other families did not have to go through what she and my dad had experienced in order to receive a diagnosis.
As a child and young adult, I experienced school bullying and multiple threats. I was initially ‘denied’ my college application due to the university not wanting to be ‘responsible’ for someone with my diagnosis. I was home schooled for several months due to my confidence and safety being so compromised.
Growing up I did feel very different. While I was so thankful to my mum and dad for always ensuring that I led a ‘normal’ and healthy life, not being labelled or dictated to by my illness, I know that it still took its toll and was a strain on my family. I could not help but feel different; I felt like such a burden on them both, as well as my older sister, Charlotte. My mum and/or dad always accompanied me on school trips, my sister too was also very supportive, so that I could join in during after school clubs and be involved in activities and social events. Even playing with friends, I felt different. I was the girl who passed out, the one who’s heart stopped…I was never ‘just me’.
I knew that I could not spend all my time worrying, so I chose to accompany my mother in increasing awareness, education, resources and support for patients and families battling with RAS. I travelled internationally with her, to learn more about my condition and meet with other individuals and families, as well as medical professionals. As such I serve as the Executive Manager of Arrhythmia Alliance in the United States. I am living proof that you can live an active life with RAS and I hope to give inspiration to all others who are struggling with this rare illness.
- Francesca Lobban, Executive Manager