Living with Hypertrophic Cardiomyopathy

Katie, 21 from the Rhondda Valleys shares her story of living with Hypertrophic Cardiomyopathy.

I’m Katie, I’m a 21 year old young woman and I have a heart defect called Hypertrophic Cardiomyopathy. I was diagnosed with Hypertrophic Cardiomyopathy (HCM) before birth so I’ve lived with the condition all my life. HCM causes the heart muscle to become abnormally thick which makes it more difficult for the heart to pump blood effectively. Throughout my childhood I was faced with many challenges from countless hospital admissions to missing about 4 years of schooling if you add it up. Having hospital appointments and admissions soon became normal to me. I was treated and looked after by a consultant in University of Wales Hospital. I was a resilient child and not fazed about the amount of time I spent at hospital. I even found my hospital appointments fun to be at.  I remember the old children’s outpatients, the waiting room filled with toys and the children’s drawings on the wall and the giant Connect 4 in the corner. I once took my younger cousin along with me to my appointment. It was my older sister’s 11th birthday so me and my cousin ran off the Little Tikes playhouse and made a stickle brick birthday cake and used the rectangle shaped bricks to make the number 11.   We carried our ‘masterpiece’ back out into the waiting room and sang Happy Birthday with loud voices.

As of now my heart is stable and is controlled by medication.  As a young adult my life is filled with new and exciting things each day. I absolutely love presenting speeches with medical professionals or students and I’ll take any opportunity that comes my way to share my story with the world. Living with a heart condition still has its challenges but I wouldn’t have my life any other way. I’ve had beautiful opportunities and met magnificent people I wouldn’t otherwise have met. I am deeply in love with the life I lead and I am thankful each and every day. My heart is full of endless gratitude.

I have Cardiomyopathy, but Cardiomyopathy doesn’t have me. I am more than my condition.

Thank you so much for taking the time to read my story, I am forever grateful.

 

Welsh Hearts partners with FA Wales to save lives

Today at Wales’ National team open training session in Wrexham, The Football Association of Wales announced their partnership with Welsh Hearts/Calonnau Cymru with Ryan Giggs at the helm. The long-term aim of the partnership is to deliver lifesaving defibrillators, equipment and training to all football clubs in Wales.

Football clubs and training facilities across Wales are often the hub of communities, used by many different teams and community groups. However, many of these integral community spaces currently do not have defibrillators installed.

This unique partnership between The FAW and Welsh Hearts aims to change that and ensure that in the future every player and spectator in every football club in Wales, no matter how big or small, will have access to a lifesaving defibrillator.

Wrexham based Penycae Football Club were present at the training session to be the first recipients of the FAW, Welsh Hearts defibrillators to be fitted at their ground.

Football Association of Wales Medical Services Manager & Lead Physiotherapist, Sean Connelly added:

“At The Football Association of Wales, we recognize the importance of investing in the health and wellbeing of our footballers and the wider community groups using football facilities across the country.”

“With this partnership we will work together to fundraise to aid Welsh Hearts with the amazing work they do for heart health in Wales and together we hope that this equipment will minimise the terrible instances from sudden cardiac arrests that have occurred in football grounds across Wales”.

 Sharon Owen Charity director said “This initiative complements the ambitious work of Welsh Hearts in communities throughout Wales. We believe the impact on lives will be far-reaching, as lives should not be lost, due to a lack of a public access defibrillator in the event of an emergency. They should be available everywhere. We are excited to work with the FAW as they are at the heart of communities in Wales

 

To join the Football Association of Wales and Welsh Hearts in the efforts to safeguard our footballers and spectators across the country, you can donate via the JustGiving site:  https://www.justgiving.com/campaigns/charity/welshhearts/faw

 

To apply for a defibrillator: http://welshhearts.org/online-defibrillator-application-form/

Welsh Hearts’ May Day Carnival

Welsh Hearts’ popular May Day Carnival is back for another year!

The event will be held at Llandaff Rowing Club and we’ve got a jam packed day planned with craft stalls, fun fair rides, face painting, BBQ, hog roast, and licenced bar, entertainment, clown, ice cream stands, food outlets, family games, bouncy castle and much more!

Entry is free, with parking available nearby at the BBC building for a £1 donation.

Entertainment on the day will be provided by James Williams, Liza Starlight, Go Theatre, Kinetic Theatre School, Dixilanders Jazz Band.

Check out the event on Facebook here

 

Welsh Hearts Screening Day

Welsh Hearts hosts regular screening days where anyone aged 16-40 can come along and have a simple, painless ECG scan to detect undiagnosed heart problems. You can find out more and book a slot by visiting: http://welshhearts.org/our-work/heartscreeningwales/

Make a Heart Sign for Heart Awareness Month

Did you know February is Heart Awareness Month?

So we’re asking you to make the iconic heart sign, take a photo and share it with us on social media to raise awareness for heart health in Wales. If you want to go the extra mile, you can text ‘WHHH33 £2’ to 70070 to donate £2 and help us place Defibrillators in communities throughout Wales. Don’t forget to tag your friends and nominate them to do the same.

We also want to encourage people to go out and find where their nearest Defibrillator is in their community. Why not find yours, take a selfie with it and post it to social media with the hashtag #Defibuary.

Even Anton DuBeke and Erin Boag got involved when they came to Cardiff as part of their From Broadway to Hollywood tour!

For alternative ways you can donate to Welsh Hearts, please go to http://welshhearts.org/donate

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