Living with Long QT Syndrome
Long QT Syndrome is more than just a heart condition and comes with many lifestyle complications and emotional challenges; something that is now being recognised by healthcare professionals, pharmaceutical companies and the worldwide community.
It is normal to be anxious about Long QT Syndrome and it is normal to sometimes be sad that things are unfair and not quite 'normal'
Fortunately, there is a lot of help and support for patients and families of people living with Long QT.
It is always worth remembering that knowing your enemy is part of the battle. Once you know the threat, you can take measures to minimise it.
Just some of the organisations out there with great information and support!
And there is a very knowledgeable and widespread community of Long QT patients.
I would say it is probably best to first contact the above organisations as you can't always believe what Sandra from South Carolina says,
Historically, patients with long QT syndrome were restricted from participation in competitive sports. The 2005 guidance was ‘When in doubt, kick them out’. Now physical activity being too risky for Long QT patients is no longer the main concern; rather, what can be done to circumvent, neutralise, or minimise risk to allow people to participate safely.
A 20 year study, including 495 athletes with LQTS participating in organised, competitive sports, found NO sport-related deaths.
“When you then allow those patients to exercise, the risk of cardiac events is actually low... In shared decision-making, we know the risk isn’t zero, but it isn’t necessarily higher if we do allow them to participate in exercise.” (Dalal)
Some restrictions outlined in exercise and sports guideline-based recommendations may be appropriate e.g. caution of water sports for LQTS1. Return to competitive sports can be considered if there have been no events for 3 months after treatment, which may include medications, such as therapy with beta-blockers (e.g. propranolol or nadolol), and/or an ICD.
Some patients need to take medications that can prolong the QT interval, In some situations it simply can't be avoided and again should be part of a shared decision with a doctor.
Not being able to take medications to make you or your loved ones feel better is very inconvenient at times but in some situations these can be avoided with natural remedies (i.e. honey and lemon with paracetamol for a cold).