After years of fainting episodes and misdiagnoses, Dalia discovered she was living with Long QT Syndrome – and turned her journey into one of resilience, advocacy, and hope.
By: The SADS Foundation and Dalia B.
Published October 20, 2025 | 10 min read
“I don’t remember life before my ICD. Everything that happened shaped the woman I am today.”
– Dalia
Two Fainting Spells in Two Years
When Dalia fainted for the first time at age seven, it seemed like nothing more than a random episode. Two fainting spells in just two months led doctors to misdiagnose her with epilepsy. Years later, after coming off her epilepsy medication, everything changed when she discovered the truth: she was living with a rare, life-threatening heart condition called Long QT Syndrome.
That revelation marked the beginning of a journey that would test her endurance, resilience, and spirit in unimaginable ways. Today, Dalia shares her story not only to spread awareness, but to give hope to others walking the same uncertain road.
A few years after her epilepsy medication was stopped, a severe case of the flu disrupted her electrolytes and left her vulnerable to heart episodes. One day, while visiting her pediatrician of 12 years, she fainted right there in the clinic. Alarmed, her doctor urged her parents to rush her to the ER. On the monitor, doctors watched as her heart rate shot violently from 26 to 220 beats per minute.
“The first thing they asked was if we had a history of sudden death in the family,” Dalia recalls. Her parents had to say yes. Her mother’s sister had died suddenly at just 19. Tests confirmed what the doctors feared: Dalia had Long QT Syndrome Type 2, a rare inherited heart rhythm disorder. At only 12 years old, she was fitted with her first ICD, a small device implanted in her chest that could jolt her heart back into rhythm if it ever slipped into danger.
“It was a huge change in my life,” Dalia says. “But I’m grateful. I don’t remember life before my ICD. Everything I went through shaped the woman I am today.”
Genetic testing revealed something extraordinary: both of her parents carried Long QT gene mutations. Further testing showed that several relatives on her father’s side were also affected, making the condition deeply woven into her family’s story.
Finding Strength, Despite the Storm
When Dalia left Saudi Arabia to study at the University of Southampton in the UK, she was eager to embrace her independence. But just two days before her first day of classes, disaster struck. Her ICD alarm went off, and at the hospital she learned immediately that one of her leads had fractured. This dangerous failure could have triggered inappropriate shocks to her heart, and she was rushed into emergency surgery. “It was devastating,” she remembers. “I missed my first day of university, and I developed PTSD around beeping sounds. I couldn’t even hear a microwave without panicking.”
The challenges did not stop there. Three years later, during her final exams, she collapsed again when her ICD delivered a life-saving shock. Over the next three weeks, she endured eight more shocks, a terrifying ordeal known as a storm of shocks.
The trauma left her fearful and unable to focus. “I couldn’t sit still. I couldn’t stop thinking about my heart. I felt like a prisoner in my own body.”
“I couldn’t sit still. I couldn’t stop thinking about my heart. I felt like a prisoner in my own body.”
Dalia made the brave choice to step back from her studies and return home to Saudi Arabia to heal both physically and mentally. With the support of doctors and psychologists, she learned to manage her anxiety. Starting medication was not easy, since some anxiety drugs worsen Long QT, but with careful monitoring she slowly began to feel like herself again.
“Not just myself, a stronger and better version of myself,” she says.
She returned to the UK, finished her degree, and went on to earn her Master’s. Along the way, she began volunteering in a hospital program called Time for You, visiting elderly patients who were alone or in recovery. “It grounded me,” she reflects. “After everything I had been through, giving back reminded me of my strength.”
Living with a condition like Long QT Syndrome isn’t easy. But we want you to know that you’re not alone. During meetings with the FDA in 2023 and 2024, we learned that people living with genetic heat conditions like LQTS rate anxiety and depression as one of the most burdensome health effects that they experience on a daily basis.
🫂 We host monthly virtual support groups for those who are experiencing anxiety or PTSD due to ICD shocks or their diagnosis. Learn more here.
“Don’t let your condition be a showstopper”
Since then, Dalia has defied every expectation. Despite warnings to avoid stressful environments, she built a thriving career. She began in consulting, a field notorious for its intensity, before joining one of Saudi Arabia’s giga projects under the Public Investment Fund (PIF), a role that places her at the heart of some of the Kingdom’s most ambitious national transformations.
Today, she is on her third ICD and continues regular follow-ups with her medical team. Beyond her career, she remains an active voice in the heart community, speaking at SADS UK events and inspiring others with her story.
Did you know? The SADS Foundation has held 19 International Family Conferences with speakers like Dalia. Learn more here.
“Don’t let your condition be a showstopper,” Dalia advises others living with Long QT Syndrome. “It can be overwhelming, but you can carry it as a burden – or proudly, as a part of who you are.”
Today, Dalia continues to advocate for greater awareness and support for people with inherited heart rhythm conditions. She’s eager to connect with others through peer support, educational resources, and international collaboration.
“I’ve learned that life with Long QT Syndrome doesn’t mean you have to live in fear,” she says. “It means learning to live fully, with gratitude, resilience, and hope.”
👉 Want to connect others with Long QT Syndrome? Learn more here →
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