A condition close to my heart

By: Arun

My sister who I am very close to, has issues with her oesophagus which means she cannot swallow food so this means she has to be tube fed; it also affects her legs so she is assisted with a crutch. She also spends a lot of time in hospital with new symptoms and complications with her tube which has led her to fight for her life on numerous occasions.

The condition has not just had an effect on my sister and dad but on my mum who had to give up her job and become my sister’s full time carer. Now we do not need sympathy but over the years it has been a constant battle with doctors as not many people know about it. It’s only in the last few years or so that doctors have heard about it, but most still do not understand it fully. This is why I would like to raise money and awareness for EDS UK.

EDS UK charity is very close to my heart because my sister and dad have both been diagnosed with Ehlers-Danlos syndrome (EDS)


In the past I have put my fear of heights to one side and conquered the O2 and also did a Santa Fun Run at Christmas. For a while now I have been looking for a new challenge, something that will put me right out of my comfort zone, so I’m proud to announce my next challenge will be participating in the Prudential Ride London Cycle – 100 miles through London and the Surrey countryside.

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It will be a massive challenge for me to get fit and get my body conditioned to complete this but I have never been so motivated and focused for something which is close to my heart. The event falls on my late grandma’s birthday so it will be quite a poignant emotional day!”

Huge thanks to Arun raising £1,236.00 and helping those living with and affected by EDS.