If you have recently received a diagnosis of Takotsubo syndrome (TTS) you are probably wondering what this condition is and how it will affect your future health. Many people, including friends and family, have never heard of TTS. Not all health professionals are familiar with this condition and so it may be difficult to get the information and support that you need. In response to this problem, a support group was launched on Facebook that enables people who have had a diagnosis of TTS to share experiences and knowledge with others.
The Takotsubo Support Group (TSG) is a closed group on Facebook that currently has over 1500 members from around the world. The TSG continues to expand rapidly as detection of TTS improves. The TSG is supported by Caron Curragh, who has a post-graduate degree in Clinical Hypnotherapy/ Psychotherapy and has experienced TS firsthand, and Dr. Angela Kucia, a cardiac nurse and researcher who has been involved with Takotsubo research since 2006. Caron and Angela provide current information and recent relevant research publications as they become available, or as requested by the TSG membership. Most important of all is the TSG membership who share experiences, give advice and offer warm support to new (and veteran) TSG members so that you know that there is always someone to turn to who understands what it is like to have TS. The aim of the group is to create a space where you can seek information and support from others who know how you feel. The members of the group provide great support and encouragement through sharing experiences and provide helpful suggestions to aid recovery and regain confidence.
There is also a TSG ‘chat room’ where you can informally interact with other members about every day events that may not be specifically related to TTS.
The Takotsubo Support Group (TSG) is available through Facebook. The TSG is a closed group that is only open to the following people:
When you ask to join the TSG, you will be asked to state that you meet one of these criteria and provide the year of diagnosis and hospital where diagnosed. This is to protect the privacy of those in the group, including you. You can access the TSG at http://www.facebook.com/groups/TakotsuboSupport.
