The following resources may be of interest to people with takotsubo syndrome.
The Takotsubo Support Group (TSG) aims to create a space where people with takotsubo syndrome (TTS) can seek information and support from others who have this condition. The members of the group provide great support and encouragement through sharing experiences and provide helpful suggestions to aid recovery and regain confidence. This group is on the Facebook platform (so Facebook membership is required to access the group) and membership is only open to those who have had TTS. If the person with TTS is not able to use (or does not have access to) social media, a relative may join on their behalf.
The ICD Support Group is comprised of people with an implantable cardioverter-defibrillator (ICD), their friends and relatives, and people who are concerned about or know someone with an ICD. The group was established in 2005 and aims to help those with an ICD gain a better insight into their lives with an ICD and to help others to understand what it is like to live with an ICD.
American Heart Association (AHA) is a nationwide voluntary health organisation composed of science and lay volunteers and supported by professional staff with the goal of improving heart health and reducing deaths from cardiovascular diseases and stroke. The AHA funds research though donations and is a good source of information about heart health, scientific guidelines, positions and statements, and new research. There is information on various cardiac conditions and procedures that is easy to understand and suitable for non-professional health consumers, but there is little on takotsubo syndrome currently.
British Heart Foundation (BHF) is a charity dedicated to fighting heart disease. The BHF funds research through donations and has good general information about heart health and some cardiac conditions. The BHF has been very supportive of people in the UK with takotsubo syndrome and has some good links to information and research in takotsubo syndrome.
Cardiomyopathy UK is the specialist national charity for people affected by cardiomyopathy. They provide support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research. Cardiomyopathy UK has been very supportive of people with takotsubo syndrome and has some good links to information and research in takotsubo syndrome. Cardiomyopathy UK funds the service of a specialist nurse for people with cardiomyopathy in the UK Monday – Friday 08:30-16:30. They also have a link to our Takotsubo Support Group (TSG).
Heart Failure Matters is an educational website available in 10 languages, developed by cardiologists, nurses, primary care physicians and patients from the Heart Failure Association of the European Society of Cardiology (ESC). It highlights lifestyle adjustments that enable patients with heart failure to maintain their quality-of-life. Users also include doctors and nurses, who will find it helpful to provide practical information to patients.
Heart Foundation (Australia) The Heart Foundation is a charity dedicated to fighting heart disease. The Heart Foundation funds research through donations and has good general information about heart health, but there is nothing about takotsubo syndrome currently.
Her Heart is a health promotion charity and registered not-for-profit that aims to educate women on the risks of heart disease.
SCAD Alliance is an organisation that is committed to improving the lives of people with spontaneous coronary artery dissection (SCAD) and their families through education, advocacy, research and support.
Beyond Blue is an Australian organisation that offers support to Australians who are dealing with anxiety, stress and depression, but there are many resources on this website that are useful no matter where you are. Many of the resources and links provided are specific to different personal and life situations.
Mental Health Foundation is a UK organisation that endeavours to help people understand, protect and sustain their mental health. Visit their page on how to manage and reduce stress.
Disclaimer: The Takotsubo Network has no control over the content on the above websites and does not endorse or accept any responsibility for the content or use of such website. We would appreciate feedback on the usefulness of sites listed, including advice on links that are no longer active.
