by kymera_editor | Dec 20, 2017 | ICD, Online Patient Communities, Research
As a fast growing online patient support community with 5700+ members, my Facebook group “Living with an ICD” is attracting the attention of researchers. More and more, they discover the potential of social media to reach patients for medical studies. Unfortunately,...
by kymera_editor | Nov 13, 2017 | Camp, Connecting with others
Camp can be an exciting and formative time during kids’ summer vacations, however for many parents with children with a heart disease, it might not be considered an option. As the director of one of several camps aimed specifically at children with heart disease, I am...
by kymera_editor | Oct 18, 2017 | Research
“This possibly represents the greatest discovery of the century. With this technology, we could end suffering and disease for billions of people.” Stephen Heitner, M.D., a cardiologist at OHSU in Portland, Oregon, was a member of the research team who showed it is...
by kymera_editor | Sep 20, 2017 | CPVT
I very often hear people tell others to “live like you’re dying” but I think we can all agree that is not great advice. I understand the sentiment: don’t wait to do the things that matter to you or whatever. Here’s the thing though, the...
by kymera_editor | Aug 29, 2017 | ICD
After a few years of my initial implant of my ICD, I started to have pain in my incision. The pain started out as mild and only occur occasionally. After my first replacement in 2004, the pain started to get more moderate and it occur more frequently but I did not...
