A British organization, Cardiac Risk in the Young, was established in 1995 to raise awareness of conditions that can lead to young sudden cardiac death. In the video found on this page, posted earlier this year, a consulting physician does an excellent job explaining Brugada Syndrome. Near the end, he discusses some things that patients should be aware of and avoid, in order to lessen the probability of a cardiac event.
He mentions the family of tricyclic antidepressants as being dangerous to the Brugada Syndrome patient and also warns patients to monitor their body temperature, as fevers are associated with increased probability of having a cardiac event if one has Brugada Syndrome.
Most patients with Brugada Syndrome know that it's primarily a passive condition, with no symptoms. Other than the inconvenience of having and maintaining an ICD, the typical healthy patient leads a normal life. It's easy to forgot how serious this condition is!
So, the wise patient keeps up with the literature on the syndrome. Since Brugada Syndrome is so rare, progress seems to move at a snail's pace. But every once in a while, an article, video, interview or event is discovered to help patients learn more about it, and this helps them manage their own lives and feel more in control of their own health and futures.
1 comment:
Hello!
Thank you so much for the "Brugada Syndrome" blog! I found it both interesting and inspiring!
My name is Rukaiyah and I am part of a team currently participating in an internship with the Rare Genomics Institute. The Rare Genomics Institute is a not-for-profit organization that supports families who are affected by rare diseases. As the majority of rare diseases are genetic in nature, the Rare Genomics Institute uses donations and grants to give patients access to cutting-edge technologies and leading medical experts by funding full genome sequencing for patients. By analyzing the results, experts hope to find the cause of the disorder. From there, treatments and therapies are developed in an attempt to cure the disease. To learn more about the Rare Genomics Institute and read some of their patients’ stories, please visit: http://www.raregenomics.org/.
As a part of our internship, we would like to interview individuals affected by a rare disease (patients, family members, etc.). The purpose of the interview will be to discuss the impact of rare diseases and the difficulties of coping with them. This will help the Rare Genomics Institute better understand patients’ struggles and allow them to determine how best to care for their patients.
Please send us an email at rgi.internship@gmail.com if you would be willing to participate in a phone interview for this cause.
Thank you very much for your support!
Have a great day!
Post a Comment