Leg pains in CHD: a distressing symptom of a wider problem

Anecdotal reports suggest that children and young adults with CHD frequently experience pain in their legs. The purpose of this pilot study, performed by Little Hearts Matter patient organisation, was to assess the burden of leg pains in this group and begin to investigate associated factors and consequences for daily living. To read the full report please click on the link above.

25th Anniversary Membership Survey – Creating a Better Future.

In its 25th Anniversary year Little Hearts Matter sought to review how the needs of its membership may have changed over the past 25 years and where their greatest challenges are moving forward. The following paper explores the results of the survey and sets out the actions that the charity will take moving forward. Click Here to access the survey

 

Research priorities in single-ventricle heart conditions: a United Kingdom national study

The object was to bring together stakeholders in the United Kingdom to establish national priorities for research in single-ventricle heart conditions. In partnership with Little Hearts Matter, the group in Birmingham brought together patients, their parents, healthcare professionals, researchers and charities from across the UK. Their findings have been published in the journal Cardiology in the Young and can be viewed by clicking on the link above.

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    Most children born with a single ventricle heart undergo a series of open heart surgeries from a very early age. In our eyes, they are all champions in their own special way.

    The medical experiences of these families is now being researched by a team of NHS specialists, with an aim to shape the future of patient experience for children affected by congenital heart disease.

    We have collaborated with the NHS to take part in this special and incredibly important research project. It is called Champion and is open to members of Little Hearts Matter – parents, adults and teenagers.

    We urge you to join the study, it is so important to our community and will help to drive real positive changes. All you have to do is answer a few questions. Please complete an application form and you will be contacted by LHM with more info.

    Here is the application form 👉 bit.ly/35KLG7n

    Photo of Acer, TGA, and VSD, kindly shared by parent member Katie, thank you.
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    9 hours ago  ·  

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    If you didn't snap it 📸 it didn't snow 😉

    Great to see so many of our young members getting out and enjoying some fun in the snow! ☃️

    Keeping hands, feet and noses warm when you only have half a heart can be a challenge, so please remember we have our winter warmers information, linked below 👇

    bit.ly/2YeuItK

    Half a heart, not half a life ❤
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    24 hours ago  ·  

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