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Heart valve diseases
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55 public communities
Heart Valve Voice
348 members
Heart Valve Voice is the UK's dedicated heart valve disease charity. Heart Valve Voice is a collection of people with real experiences of heart valve disease, including a multi-disciplinary group of experts in the field (cardiologists, cardiac surgeons, GPs), cardiac patient societies and, most importantly, patients. We work with patients and clinicians to help increase the awareness of heart valve disease in the UK and improve diagnosis and treatment. Heart valve disease affects over 1.5 million people over the age of 65 in the UK and while there have been many advancements in the treatment of this disease the unfortunate fact is that far too many people are not being diagnosed and treated early enough. As a patient organisation, the power of our voice comes from the lived experiences of our patient community. Their stories are our lifeblood, and we use those experiences to affect change for future valve disease patients. Our community is a place where people can share their experiences, support each other and learn about heart valve disease treatment. You can read some of our heart valve disease stories here <https://heartvalvevoice.com/heart-valve-disease/stories> Our aim is to ensure that more of the population is aware of the importance of having their heart checked for heart valve disease, which can often be detected through a simple stethoscope check. With increased awareness, we hope to see many more heart valve disease patients get the treatment they need to go on to live full and happy lives.
British Heart Foundation
50,164 members
We are the British Heart Foundation (BHF), the largest independent funder of cardiovascular research. We fund research into life saving cures to beat heart disease, stroke and vascular dementia, and stop conditions like diabetes from causing them, to help people and families live longer, better lives. Over the years, our pioneering research has helped to transform the lives of people living with heart and circulatory conditions. As well funding ground-breaking research, we’re here to support people affected by heart and circulatory diseases and their risk factors. So whether you're living with a heart or circulatory disease, or just want to find out more about them, this is the place to be. If you have any questions or concerns, and would like to speak with one of our cardiac nurses, please do contact our Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm or email hearthelpline@bhf.org.uk This community is moderated by HU_Moderator
Sudden Cardiac Arrest & Heart Attack
2,215 members
We are a peer support community for sudden cardiac arrest and heart attack survivors. Join to talk about cardiac rehab, lifestyle changes, heart healthy lifestyle, and heart-related news - everyone is welcome!
No Smoking Day
5,219 members
The 'No Smoking Day' community inspires and helps smokers who want to quit, and is supported by an alliance of UK health bodies and charities. One in five UK adults smoke, doubling their risk of heart attack and stroke. Stopping smoking is the single best thing you can do for your heart health, and the risk to heart health decreases significantly soon after stopping.
Unsalted Heart
524 members
Being heart healthy is more than just watching Saturated and Trans fats. If you have too much sodium/salt in your diet, it can continue to put you at risk for heart disease. Join the conversation to learn more!
Heart Failure Support
811 members
We are an international charity working to support early diagnosis and improve outcomes for heart failure patients and carers worldwide. Please share your experiences below or give us a call on +44 (0)1789 867 501 if you would like further info or advice on arrhythmia care and treatments. We are here to help.
EFA
2,070 members
European Federation of Allergy and Airways Diseases Patients’ Associations. We are a community dedicated to supporting those impacted by allergy and airway diseases, such as asthma.
The UK Mastocytosis Support Group
549 members
The UK Mastocytosis Support Group community is for anyone with diagnosed or un-diagnosed Mast Cell Diseases or those supporting them. The UK Mastocytosis Support Group is a charity that supports people with Mast Cell Diseases including Mastocytosis and mast cell activation syndromes. We support people by informing them of various aspects of Mast Cell Diseases and testing.
Anticoagulation Support
3,803 members
The Anticoagulation Support community is for anyone impacted by a health condition such as atrial fibrillation, stroke, deep vein thrombosis (DVT) and pulmonary embolism (PE), aortic heart valve replacement, antiphospholipid syndrome and thrombotic disorders. These conditions can increase the risk of blood clots or thrombosis and may require anticoagulation therapy to treat or prevent blood clots from happening. Anticoagulant therapy is sometimes described as a blood thinner and can be given for a short period of time (to prevent clots after hip and knee replacement surgery) or long term for people with thrombotic disorders to prevent recurrence of clotting episodes. Some people may be offered anticoagulation medication when they are being treated for cancer. Anyone requiring anticoagulation therapy should discuss medication options with a health care provider and be given adequate information around the duration and monitoring of the treatment provided. In the UK, there are several oral anticoagulant medications available - Apixaban, Dabigatran, Edoxaban, Rivaroxaban and Warfarin. Heparin is given by injection. Anticoagulation Support aims to help individuals engage with people who have lived experience of living with a condition and being treated with anticoagulants. The site is moderated by HealthUnlocked with input from an anticoagulation patient expert and an anticoagulation healthcare professional. For information about anticoagulation therapy and related conditions visit.... NHS website - https://www.nhs.uk/ National Institute of Health and Care Excellence(NICE) - https://www.nice.org.uk
Teesside Lupus Support Group
294 members
Teesside Lupus Support Group is a group in the North East which aims to raise awareness of Lupus and all diseases associated with it. We give support and information to newly diagnosed and to those living with Lupus. We endeavour to gather as much information as we can to support one another. We also hold meetings and give one to one support to those who need it.
Heart Rhythm Disorders Support
6,761 members
We are an international charity working to support early diagnosis and improve outcomes for arrhythmia patients and carers worldwide. Please share your experiences below or give us a call on +44 (0)1789 867 501 if you would like further info or advice on arrhythmia care and treatments. We are here to help.
Behçet's UK
5,252 members
Behçet’s UK cares for all those affected by Behçet’s including diagnosed patients, those not yet diagnosed, those that think they may have Behçet's, and their carers. We promote research into the condition and our ultimate aim is to find a cure but in the meantime, we will strive to obtain the best care for all Behçet’s patients. Our Behçet's UK Medical Factsheets (https://behcetsuk.org/behcets-medical-factsheets) are written by lead Behçet’s clinicians. Behçet’s UK: How we help - We were instrumental in establishing Specialist Centres for Behçet’s in NHS England and we now lobby for equivalent care in Wales, Scotland, and Northern Ireland. - Hold an Annual General Meeting and Conference. Allowing those affected by Behçet’s to hear from Behçet’s specialists and patients, ask questions, and meet others with this rare condition. - Publish a quarterly newsletter keeping our members up to date with the Society’s activities including lobbying on rare diseases along with our work with researchers. - Maintain an active Medical Advisory Panel with eminent representatives from each of the medical disciplines involved in Behçet’s to whom questions can be directed. - Manage a website that includes factsheets written by lead Behçet’s clinicians on each of the areas affected by Behçet’s. - Provide a Helpline run by volunteers who have an understanding of Behçet’s. - Facilitate peer-to-peer support groups to minimise the isolation experienced by patients. - Award small personal grants for items that will help members manage their Behçet’s day-to-day. - Host an annual event for members to have fun with their friends, family, and carers and get to know others affected by Behçet’s Become a member Join here: https://behcetsuk.org/how-to-join/
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