Long Q-T Syndrome Patient on Capitol Hill - We Can Easily Help!

Patient Expert

Heart disease comes in many forms. It can be mild to severe; non-life-threatening or life-threatening; diagnosed or undiagnosed; debilitating or not. One issue that all forms of heart disease have in common is a lack of adequate research funding.

This is an issue that we can choose to ignore and assume that other people will work on it, or we can choose to take action. Many people share the common misconception that taking action means a huge investment of time, energy, and or money. Nothing could be further from the truth, so I want to introduce you to an upcoming event in which anyone who is able to read this post can participate in.

Amber Johnson is a You're the Cure volunteer. You're the Cure is an initiative of the American Heart Association. Amber shares that for 32 years, she led a relatively healthy life before learning that she has long Q-T syndrome (LQTS), a heart rhythm disorder. If not treated, LQTS can strike at any time and can be fatal.

How Long Q-T Syndrome Works:

The heart produces an electrical signal when it contracts, producing a waveform. This waveform has multiple sections that are designated by the letters P, Q, R, S, and T. The Q-T interval is the time it takes for electrical activation and inactivation for the lower chambers of the heart (the ventricles). the Q-T can be measured in fractions of a second to determine if it occurs in a normal amount of time. If this interval is longer than normal, it's called a prolonged Q-T interval.

Long Q-T syndrome (LQTS) is an infrequent, hereditary disorder that can occur in otherwise healthy people. It usually affects children or young adults. The most common symptoms of LQTS are arrhythmia (abnormal heart rate and / or abnormal heartbeat rhythm) and syncope (fainting). Possible treatments for LQTS include medications such as beta blockers and implantable defibrillators. The possible causes of LQTS include:

  • being startled by a noise,
  • intense emotion, or
  • exercise or other physical activity.

Amber's Mission and How We Can Help:

On Monday, May 11, 2015, Amber and other You're the Cure advocates will be meeting in Washington, D.C. On May 12, they'll be visiting Capitol Hill for You're the Cure on the Hill 2015, during which they'll be talking with Senators and Members of the House about how crucial heart and stroke research funding is.

Here's where each of us can help. On Monday, May 11, we can:

  1. Call our Senators and Members of the House.
  2. Email our Senators and Members of the House.
  3. Reach out to spread the word on social media.

All three of these tasks can be accomplished on a smart phone, or we can call from any phone and take care of points two and three on our computers. To make it even easier for us, we can register online now, and receive a phone call or text message on May 11 to remind us of what to do and help us accomplish it as simply as possible.

Will You Please Join Me?

Last month, I went to Capitol Hill for Headache on the Hill, a similar even that's held annually to talk with our Senators and Members of the House about the needs of patients with migraine and other headache disorders. My appointments on Capitol Hill began at 10:00 a.m., and didn't end until 5:30 p.m. I won't fib to you. It was an exhausting day, and it took me that night and all of the next day to recover. But, I've attended Headache on the Hill six times, and I'll do it again next year because it's so vitally important that we communicate with our legislators on Capitol Hill. THEY are there to represent _US _, and it's one of our rights as American Citizens to tell our elected officials what we want and expect.

You and I have the right and even the responsibility to speak up let our legislators on Capitol Hill know what we think and want. In the case of You're the Cure on the Hill 2015, steps have been taken to ensure that we all have that opportunity, even if we can't be there, and that's vitally important too. Thank you to everyone at the American Heart Association and You're the Cure who is working so hard to ensure that all of us have the opportunity to be heard.

I've already registered to be part of this great advocacy opportunity. Will you join me? You can also help spread the word by sharing the link to this post with your friends via email, Facebook, Twitter, and any other way you can think of. I do hope you're able to join me! _Please register online now! _


The American Heart Association. "Conduction Disorders: Long Q-T Syndrome." www.heart.org. Last reviewed October 23, 2014.

From my heart to yours,

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