The Sudden Cardiac Arrest Network™ is an online community for sudden cardiac arrest survivors, families affected by cardiac arrest, lay rescuers, and other advocates. The Network enables community members to create profiles, post blogs and comments, find others with similar experiences, provide peer support, and collaborate on common goals. Survivors can share their stories and images. Patients and families can participate in survey research—conducted in collaboration with universities and hospitals—to better understand key issues and identify unmet needs.
We are currently working with several research groups. If you would like to participate in research related to resuscitation experiences and post-resuscitation quality of life, please join the community today.
Thank you for considering this opportunity to build a community dedicated to saving more lives.
Henry Jampel, MD, MHS
Survivor and Chair, Board of Directors, Sudden Cardiac Arrest Foundation
To learn more, click here. To join the community, register here. If you registered previously, login here.
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Comments
Long Term Survivorship
Hi doctor,
I think we all appreciate how much is being done by the sudden Cardiac Arrest foundation for survivors. Unfortunately, it seems as though the bulk of the energy and attention is being paid to immediate post-intercessory survivors. There are groups on Facebook that address these people, and here on this site there are a number of tremendous volunteers who do everything they can to assist, in particular, new SCA survivors.
And while the network here on scaf provides a great deal of information-- survivors stories, blog entries and the like--there's still not enough being done to help care for survivors long-term. It is a passion of mine to examine this anomaly and to learn why there isn't more being done for survivors After all, cancer survivors have support groups, those suffering from multiple sclerosis have support groups that include virtual online monthly meetings or weekly meetings of survivors, people can go on those meetings and discuss their situation, ask for advice and receive, if nothing more, an ear.
I remain astonished that there isn't a more formal network of survivors; after over 2 years of surviving, I'm getting tired of surviving alone. I'm becoming weary of the residual pain from resuscitation, of the lingering cognitive issues and the emotional roller coaster ride.
Instead of getting help, many survivors feel as though they should be volunteers in the quest to increase survival rates, that even in the midst of their own fragile and confusing recovery they are being asked to listen to other survivors and offer... What?
I'm sure that you have a lot of things on your mind, and I know that you are proud of the success of this organization as you should be. But I'd like to hear your thoughts with regard to something a little more established, more organized for survivors, long-term.
Thank you so much for everything that you do, and please don't take this letter to me criticism as much as it is brainstorming and trying to determine how we can continue to improve our long-term survivor care. Thanks so much.
Wendell Thorne