Discussion topics

Building awareness

Congenital rhythm disorders are treatable. Children and young adults can live happy, productive lives if they are diagnosed and treated. Building awareness in your communities is essential. Discuss with others here, the ideas and experience you need or have experienced to educate your community, school nurses and coaches, medical professionals and local emergency teams.

wish i had denial back

• By Jamesrochelle · New reply yesterday at 11:35 am
• 1 reply
• Until this week I had been going along in what I refer now to as denial. My SCA happened in July and within a week I had an ICD. It all happened so fast and without warning. I had a dream last night and ...

All 70 discussions...

Clinical and scientific research

This is the place to learn about the latest medical and research news and then discuss and ask questions about how it might affect your health and impact your life.

Innaproprate sinus Tachardia

• By Tuffy · New reply October 7, 2009
• 3 replies
• I found on the NIH website that for anyone with IST they are doing research.(only until 2010) I have called. The doctor did call me back and we have set up an appointment for this saturday to talk about ...

All 11 discussions...

ECG screening for athletes

Identifying risk saves lives. Share your experiences and ideas about how screening could be incorporated into athletic programs all over the US.

ECG screening for Athletes

• By MeghanDA · New reply July 31, 2008
• 8 replies
• I'm not sure how screening with ECGs would help to find people at risk. As I understand it, many "normal" people have porlonged QTs and some people who have LQTS have "normal" or "gray area" ECGs. Am ...

All 2 discussions...

Genetic testing

Discuss the reasons to have genetic testing done and for those that have done testing, how did the information change the family's treatment?

VT and ARVD

• By oabraham123 · New reply August 25, 2009
• 3 replies
• I have had VT since I was 17 years old. I have been back and forth in hospitals for the last 11 years. Ablation after ablation, medication after medication. Just when things seem to get better another ...

All 8 discussions...

Health insurance experiences

Coverage for testing and diagnosis of inherited heart rhythm disorders varies greatly by insurance companies. Share your experiences and get help working with insurance.

Heart problems still

• By angelk · New reply August 9, 2009
• 3 replies
• Hello, I have been on here before, but it has been awhile. Here is an update on my situation that I am sure many of you can associate with. I have had been told by one Cardiologist that my wholein my ...

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Tales of the heart memorials and tributes

Tell your story here. Remember loved ones and honor those that are survivors. Know you are not alone.

Hydroxychloroquine - Increased Pulse Rate

• By Elderly_Gentleman · Posted November 5, 2009
• 0 replies
• I have had palpatation issues for the last 20 years. Normaly about once a month my pulse rate doubles to about 150 and the experience lasts for approximatly 1 minute then the rate goes goes back to normal ...

All 9 discussions...

Teen chat

Join this discussion to share experiences with other young people who are dealing with the various aspects of heart rhythm disorders like LQTS. Talk about medical and social topics, lifestyle and relationships after a diagnosis. Meet people and make friends. Know you are not alone!

Telling friends about your heart condition

• By Cheryl1 · New reply April 15, 2008
• 1 reply
• The C.A.R.E. Foundation has been getting some requests for help to learn a good way for kids and teens to tell their friends about their heart condition. No one wants to freak out their friends and cause ...

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Help desk

Have a question about using the site? An idea for making it better? Post here and let us know how we can help.

Diagnosed with CPVT aged 9

• By latteda · New reply November 5, 2009
• 3 replies
• I would be intersted to hear how common it is for people this age diagnosed with cpvt to get the ICD as our doctor is putting it off for the time being due to our sons age. Any help out there? Sarah ...

All 33 discussions...