Spotlight on Long QT for Rare Diseases Day

Hi there! Welcome to my blog. Maybe you know already, but for those who don’t, today is Rare Diseases Day. Our family knows all about one rare disease in particular: Long QT syndrome. Long QT (LQT) has to do with the electrics of the heart.

Now, the fact that we know all about LQT is both good and bad. It is unfortunate that this genetic condition runs in my family. Honestly, I wish it didn’t. But it is also quite a good thing that we now know about this condition and how to treat it. Knowledge is power, and I feel it is so much better to know about and manage our condition so that we can live our lives fully.

What does QT stand for? The ‘Q’ and ‘T’ are waves from an ECG reading. The distance between the start of the Q wave and the end of the T wave (Q-T interval) corresponds to the time it takes for the heart to contract and refill with blood, before beginning the next contraction. A prolonged QT interval means that the length of time is beyond the normal amount of time. Although usually caused by a genetic factor, LQT may be acquired by certain medications or medical conditions.

LQT arrhythmias can result in syncope (loss of consciousness), seizures, and potentially, cardiac arrest. There are many medications that prolong the QT interval, and those should be avoided by LQT patients. There is a fantastic resource for us which easily helps to determine if a drug is safe to take or not. It is called Credible Meds and is free, easy to register for, and is an app you can have on your phone.

The great news is that Long QT is treatable.

I think there are a lot of things to be grateful for over this past year of the pandemic. One thing that I am thankful for is the SADS Foundation weekly Facebook live sessions with Dr. Michael Ackerman. Dr. Ackerman is an established and respected expert in the field, and every Friday night (7:20 PM Irish time, 2:20 PM EST) for 40 minutes he talks about genetic heart conditions like Long QT. He is often joined by other world class experts, talking about our conditions, covid, genetics, and generally answering our many questions. Having such easy access to so much relevant information from the most respected in the field is simply priceless. The main takeaway, which is quite positive, is that we can all manage our conditions and live full lives. That will certainly look differently for different people, but it is possible for everyone. Knowledge is key, as is treatment.

We found it immensely helpful to be involved with support groups, especially in the beginning when we were first diagnosed. The Irish Heart Foundation had a wonderful program for families at that time, which brought them together in the fun atmosphere of Barretstown (a camp set up specifically for kids with illnesses). We were able to forget those initial worries and all of the unknowns and be with other families who were going through similar experiences as well as families who’d already been through this stage and had practical advice to share with us.

My purpose of this post today is to spread the word about Long QT syndrome. Not enough people know about it, or know what to do when they see someone ‘faint’ (a typical symptom) or worse still, go into cardiac arrest. Have you taken a CPR course lately? Maybe it’s time for a refresh or to take it for the first time. You never know, you just might save a life. If you feel so inclined, it would be a great time to reach out and help your local heart organizations. They help to get people trained in CPR, which ultimately helps all of us. I just learned of a wonderful program in the US where they teach age appropriate CPR to elementary school aged children. They repeat the program every year, so that by the time the kids leave elementary school, they know CPR without even thinking. What a great way to keep the community safe!

It has truly been quite a journey, and we are still learning, but I’m hopeful for our future.

Stay safe and well!

In Peace,
Dana

This beautiful picture hangs in the kitchen for parents of patients in the cardiology ward at Crumlin Children’s hospital, in Dublin. I know this from the times we’ve been there for our Long QT. The Irish says ‘In my heart forever’.

A collage of pictures from the fun the kids had at the Barretstown weekend with other families with hereditary heart conditions.

The grounds are lovely at Barretstown, with a sweet park to stroll. This tree, fairy door and sign were my favorite.

A happy moment in time, captured with the snap of a picture. Barretstown weekend.

Thank you for stopping by. πŸ™‚