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Thanks for taking the time to visit my JustGiving page.
Many of you will be aware that I worked hard last year to raise the awareness of Loes Dietz Syndrome by taking part in many sporting activities and together we raised in excess of £5500 last year for the inherited Cardiac Unit at GOSH. THANK YOU SO MUCH
This year due to injury I will propelling all my strength and energy into just one event, the AJBell London Triathon, and in doing so my hubby and brother in law have decided to join me. Please do not feel obliged to donate but please do read and and take note and share your new founded knowledge of LDS.
Loyes-Dietz syndrome (LDS) is a genetic connective tissue disorder that affects every system in the human body. Everyone is affected differently, but the main dangers are aneurysms (stretching of arteries), which can lead to tearing of the arteries, the most serious of which occurs in the aorta, the main artery leaving the heart. If not treated properly, symptoms (including weakened blood vessels) can be fatal much sooner than in other conditions, which makes a proper diagnosis all the more important. The exact number of cases is unknown, as it was only discovered in 2005, it is widely recognised in the USA and Canada but over 1000 cases have been confirmed worldwide and this number continues to grow. It is estimated that up to 1 in 5000 people might have LDS. It is my main aim to help raise the profile and awareness of LDS within the UK to ensure that people are diagnosed in a timely manner. In doing so I hope to raise funds for The Inherited Cardiac Unit at Great Ormond Street Hospital who perform research and provide excellent management for children with LDS.
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