Question by Oh,HeyYou.: Support groups for teens with CHD?
Hello, I’m 16 and was born with a Congenital Heart Defect. I would love to talk to other teens with a CHD and read their stories. Is there a support group for teens born with a Heart Defect?! Any that you know of would really be appreciated! I’ve found support groups, however they are either for ADULTS with a CHD, OR BABIES with a CHD. NO teens! So please help! 🙂

THANK YOU 🙂

Best answer:

Answer by Ed
Dear Carissa,

Here are some support networks, which cater to families, but hopefully they are not still “in the dark” in terms of empowering & helping teens to help one another. I realize a couple may be among those you’ve already contacted and been frustrated by, but if not, please email them if you cannot any find reference to their doing it directly.

Another strategy that might work, would be to kindly request one of your parents to email these American groups, asking if there is any network and, if not, why not? So very sorry, but because you’re under 18, you may need a parent to officially “open the gate” and approve your request for you to network with other teens. But first show your parents how teens over in England have their own online mutual support networks – http://www.childrens-heart-fed.org.uk/how_we_help/brighthearts Why can’t any of these American organizations address and meet American kids similar needs for peer support?! (Possibly have them read Dr. Koop’s quote at end below, if you agree with what he described as the need).

The U.S. organizations, which I feel may be worth checking out (and emailing) are:

It’s My Heart
http://www.itsmyheart.org
Mutual-aid support provided via family matching program (matches families with others that have a similiar CHD diagnosis or by proximity), moderated online message board and listserv. Provides support, education and advocacy for those affected by congenital heart defects by creating alliances with fellow families, hospitals, support groups and the community. Newsletter, online support group and assistance in starting local support groups available.

Congenital Heart Information Network
http://www.tchin.org
Offers information, support and resources to families of children with congenital heart defects or acquired heart disease and to adults with congenital heart defects. Also open to interested professionals.

Kids With Heart
http://www.kidswithheart.org
Mutual support for families and adults affected by congenital or acquired heart defects. Also provides bereavement services. Matches persons together for support. Referrals to local support groups nationwide.

In less than 2 years, you could join this one, but only if you thought they were worth it. So why not test them out now, to see if they can be of service to potential future members by linking you with information on any teen mutual support networks now!
Adult Congenital Heart Association
http://www.achaheart.org
Seeks to improve the qualtiy of life and extend the lives of adults with congenital heart defects. Education, outreach, advocacy and promotion of research. Online information and webinars, “peer-to-peer support” and national conferences.

I hope that one of these proves helpful to you and to the other teens whom you can help, while helping yourself. If one is especially good and leads to a teen network, I kindly only ask that you briefly let me know how.

Take good gentle care of yourself,

– Ed in NJ
ed(at)selfhelpgroups.org

P.S. I tried to track down a British organization called “Grown Up Congenital Heart Patients Association” (GUCH) which is described as being “run by and for teenagers and adults with Congenital Heart Disease.” But couldn’t nail it. Maybe you might have more luck! Opps, here it is: http://www.guch.org.uk/ Guch!? Especially see their http://www.guch.org.uk/4teens/
Hopefully they may know of a similar teen-run effort over here in the States.

If I might be of further help, let me know.

To my knowledge, no one has described it better, that no matter at what age you feel the horror of it…

“My years as a medical practitioner, as well as my own first-hand experience, have taught me how important self-help groups are in assisting their members in dealing with problems, stress, hardship and pain… the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem to attempt to deal with their isolation, powerlessness, alienation, and the awful feeling that nobody understands.”
– former U.S. Surgeon General C. Everett Koop, MD

“Young people can have problems as disturbing to them as those affecting adults. They often feel more trapped and isolated since they are more vulnerable to peer pressure and the fear of ‘sticking out.’ Lack of experience in dealing with problems can further hamper their problem-solving efforts, and the lack of life experience and perspective often causes teens to blow things out of proportion. A self-help group – whether for general rapping, or for youth dealing with a specific problem – can be an extremely useful resource, a way in which youth can begin solving their own problems.”
– Mary Kay Parkinson & Nancy Sax, NJ Self-Help Group Clearinghouse, “Youth Engaged in Self-Help: a Guide for Starting Youth Self-Help Groups”

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