Heart with electrical pulses, representing Long QT syndrome.

Living with Long QT Syndrome: One Woman's Journey

Soraya Malik in Health & Wellness December 2025 • 3 min read.

"Adele Johnson shares her personal experience of diagnosis, treatment, and coping with Long QT syndrome, offering hope and information to others."

Imagine the relief of finally knowing what's wrong after experiencing unexplained and frightening symptoms. That was Adele Johnson's experience when she was diagnosed with Long QT syndrome (LQTS). However, relief quickly turned to fear as she faced a condition she had never heard of before.

For 27 years, Adele lived an active life, unaware that she had LQTS. Many people go undiagnosed for years because identifying triggers and understanding limitations is challenging. This is a potentially life-threatening condition.

Adele's journey began in August 2009 after a car accident triggered palpitations and dizziness. These symptoms led to anxiety and panic attacks, dramatically changing her life. Her story highlights the importance of awareness, early diagnosis, and finding effective coping strategies for those living with LQTS.

Understanding Long QT Syndrome

Heart with electrical pulses, representing Long QT syndrome.

Long QT syndrome is a rare heart condition affecting the electrical system of the heart. While the heart's mechanical function remains normal, LQTS can cause a dangerously fast heart rhythm called Torsade de Pointes. This arrhythmia prevents the heart from effectively pumping blood, leading to oxygen deprivation in the brain.

There are three main types of Long QT syndrome, each linked to different issues within the heart's electrical channels:

Type 1 and 2: Problems with potassium channels, often triggered by exercise or high emotional stress.
Type 3: A sodium channel issue, potentially triggered by low heart rates during sleep or rest.

Symptoms of Long QT syndrome are very similar to stress/anxiety and it's highly likely that long QT patients will also become anxious.

Finding Strength and Support

After her diagnosis, Adele wondered if she had caused her condition through lifestyle choices. This led to a period of reflection and a desire to understand and manage her health effectively. Although the initial answer of 'Nothing' was very upsetting.

Turning her experience into a positive force, Adele became an advocate for healthy lifestyles, particularly among young people. She partnered with the British Heart Foundation (BHF) to raise awareness and funds, organizing a 'Heart Disco' to educate and support others.

Adele's journey demonstrates that living with Long QT syndrome requires ongoing management, support, and a proactive approach to health. While anxiety and concerns may linger, focusing on what you can do and maintaining a strong support network can empower you to live a full and active life.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.12968/bjca.2011.6.4.204, Alternate LINK

Title: Life With Long Qt Syndrome

Subject: General Medicine

Journal: British Journal of Cardiac Nursing

Publisher: Mark Allen Group

Authors: Adele Johnson

Published: 2011-04-01

Everything You Need To Know

What is Long QT syndrome?

Long QT syndrome (LQTS) is a rare heart condition that affects the electrical system of the heart. The mechanical function of the heart might be normal, but LQTS can lead to a dangerous, fast heart rhythm called Torsade de Pointes, which can prevent the heart from pumping blood effectively. This can cause oxygen deprivation in the brain. In the context of this story, Adele Johnson's experience highlights the challenges of living with and managing LQTS, including the initial shock of diagnosis and the ongoing need to understand and adapt to the condition.

Why is it difficult to diagnose Long QT syndrome?

Early symptoms, such as palpitations and dizziness, can be misdiagnosed, as experienced by Adele. These symptoms can be easily mistaken for anxiety or panic attacks, which can delay a proper diagnosis of Long QT syndrome. This delay underscores the importance of awareness and the need for medical professionals to consider LQTS when evaluating unexplained heart-related symptoms. Awareness is critical so that those who live with LQTS can understand their condition.

What are the different types of Long QT syndrome and what triggers them?

There are three main types of Long QT syndrome. Types 1 and 2 are typically triggered by exercise or high emotional stress, and are related to potassium channel issues. Type 3 is triggered by low heart rates during sleep or rest, and is related to a sodium channel issue. These differences underscore the complexity of the condition and highlight the importance of personalized management strategies, since triggers can vary depending on the specific type of LQTS an individual has.

How long can someone have Long QT syndrome before being diagnosed?

For 27 years, Adele lived an active life, unaware that she had LQTS. Many people go undiagnosed for years. Since identifying triggers and understanding limitations is challenging. This highlights the potential for a delayed diagnosis and the impact this delay can have on a person's life. Early diagnosis is critical because it provides the opportunity to begin treatment and make lifestyle adjustments, helping to prevent potentially life-threatening cardiac events.

What challenges do people face after being diagnosed with Long QT syndrome?

Adele's story emphasizes that after diagnosis, individuals often grapple with how the condition came to be. It highlights the importance of finding reliable information, support networks, and effective coping strategies to manage the condition. The initial shock of diagnosis and the subsequent journey toward understanding and accepting the condition can be emotionally challenging.