Your life is about more than just your medical history.

Stuff happens in life. Nothing stays the same, whether it’s challenging health issues, or difficulties at school, home, work, or in relationships. Sometimes, people have a sense of uncertainty about the future when living with a heart condition. It can also be hard managing the ups and downs if you have ongoing symptoms. Feelings and situations can, at times, seem overwhelming and difficult to cope with.

Whether you are struggling with matters related to living with a congenital heart condition, or other life issues, we’re here to help.

Providing practical advice and emotional support at the moment you need someone to listen, as well as talking about your physical health, you can chat to our 16-24 community about a whole range of topics such as:

  • Mental health and mindfulness
  • Keeping fit
  • Work and money
  • Everyday living
  • Relationships and sex
  • Family matters
  • Interests and hobbies
  • And more.

Whether you engage with our community every day, or just the once, you know we are here. Just in case you need us.

Let’s chill out

Learning how to relax is particularly helpful for those times when we get anxious or panicky.


We build lasting friendships  

Across the year we organise a number of social events, weekends away and conferences. These events can be a great opportunity to meet with other people born with a heart condition, share experiences, get support and make friends. We also hold specific events for our younger members so they can connect with each other.

Check out our comic book stories 


Michael’s Growing Up Download now

An Example of Courage Download now


Transition is the term used when moving from paediatric (children) to adult services and clinics at the hospital. This process can start anytime between the ages of 14-16 years. At this time you might be asked to take on more responsibility for taking care of yourself and your heart condition. Some hospitals have specific Transition Cardiac Liaison Nurses to help you with this process. For more information read our leaflets on A Guide to Adult Cardiac Care and Lifestyle Issues.

Coping with tough times?

We all need support now and again. Here are some ideas to help you to support yourself through those times:

  • Phone a friend. It’s good to share. Try not to bottle things up. Talk to a sympathetic friend, family member, teacher, counsellor, or phone our free heart helpline on 0800 854 759.
  • It helps to talk to others who have had similar experiences. Go online, blog, get support from The Somerville Foundation Message Board, join us on Facebook and come to our events.
  • Do things you enjoy and help you to feel better. Listen to your favourite music, dance, watch TV or DVD’s, play computer games, read, go for a walk, hug a tree, stroke the dog, go out.
  • Express yourself. Write it down, start a journal, write a poem or a song, scribble, paint, draw, or dance. Don’t worry about artistic merit; it’s about ‘getting it out’.
  • Be prepared. If you know that there are times when you might feel down, angry, upset, tense, it can be useful to write a list of things that you can do and people you can call.
  • Make a ‘comfort box’ or scrapbook for yourself and put in photos, images, sayings, chocolate, a cuddly toy. Anything that you can focus on when the going gets tough.
  • Do things to help you de-stress. Relax in a warm bath, imagine yourself in a safe and comforting place, look at something peaceful or beautiful. When you feel anxious or panicky, it can help to practice calm breathing and relaxation techniques.
  • Remind yourself that feelings do pass and change over time, so hold in there and focus on getting through the day. Sit it out, wrap up in a duvet, sleep.
  • Avoid using drugs and alcohol when emotional. These can intensify feelings, affect your judgement and may lead you to feel worse.
  • Give yourself a break. Sometimes we can be hard on ourselves, expect too much or overdo it. It’s usual to have ups and downs in mood in response to what is happening in our lives. Treat yourself with kindness.
  • If you are going into hospital think about what you can take in that will help you pass the time and distract you from unpleasant procedures and tests.

Other ways to get help.

Here are some other organisations and groups that offer advice and support to children and young people born with a heart condition as well as general support resources.

  • Little Hearts Matter. A UK charity offering help to anyone affected by the diagnosis of single ventricle heart condition. They have a youth website for teenagers
  • ECHO Teens. For young people with heart conditions who’ve been treated at Evelina London Children’s Hospital, and their siblings.
  • British Heart Foundation.  Information, resources and support groups to help young people with a heart condition. Explore condition factsheets, lifestyle advice and opportunities to connect with other young people
  • Hearts4teens. A support group for young people from across the North West of England and North Wales
  • Scottish Association for Children with Heart Disorders. Full of interesting and useful information about how the charity supports children and young adults with congenital heart disorders, and their families
  • Down’s Heart Group. A charity offering support and information relating to heart conditions associated with Down’s Syndrome
  • Youth Access. The national membership organisation for young people’s information, advice, counselling and support services
  • Young Minds. The UK’s leading charity fighting for children and young people’s mental health
  • Hope Again. A safe place where you can learn from other young people, how to cope with grief, and feel less alone
  • The Mix. The UK’s leading support service for young people
  • Citizens Advice Bureau. Lots of info and advice on your rights, benefits, housing, etc.
  • Frank. Information on the effects of drugs and alcohol
  • ChildLine. For young people in distress, trouble or danger
  • Bullying UK. Listening, supportive and non-judgemental advice on bullying
  • Brook Advice Agency. Free, confidential sexual health services and advice for young people under 25
  • Switchboard. An information, support and referral service for lesbians, gay men and bisexual and trans people – and anyone considering issues around their sexuality and/or gender identity
  • Young Stonewall. Info on the issues for young lesbian, gay, bisexual and transgendered people
  • Gendered Intelligence. Specialist support for young trans people under the age of 21
  • RU-OK. Online support to help teenagers deal with common emotional problems
  • The Samaritans. For people who are in despair or suicidal
  • Papyrus. For young people who are feeling suicidal
  • Calm. For young men who are depressed
  • Students Against Depression. Info and support
  • National Self-Harm Network. Info/support for people who self-injure
  • Self-Injury Support. Service for women and girls
  • Beat. Information and support about eating disorders, difficulties with food, weight and shape
  • Youthline. Free, confidential counselling service for young people attending secondary school, and young adults up to the age of 25.

Call our heart helpline for confidential heart-to-heart support.
0300 015 1998

How can you help us?


With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.


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