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Lara Bloom

Lara's EDS Challenge

Fundraising for Ehlers-Danlos Society

46 %
£1,402.28
raised of £3,000 target
by 40 supporters
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  • Event: My EDS Challenge

May Awareness Month 2019

Join The Ehlers-Danlos Society in celebrating May as Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month and find your personal, team, or community challenge.

Charity Registration No. 1180984

Story

For US friends and supporters please visit this page to donate - https://ehlersdanlos.networkforgood.com/projects/74719-lara-bloom-s-fundraiser

It's been eight years since my last challenge living with EDS when I walked 26.2 miles and completed the London Marathon, despite having barely walked more than three miles at a time before in my life due to Ehlers-Danlos syndrome. Despite fracturing my foot on the 13th mile and suffering with a severe chest infection that hospitalised my two weeks before the race, it was the best day of my life and made me realise how essential it is to have strong muscles and strong mind to have the best quality of life possible when living with a chronic illness. 

I was diagnosed with Ehlers-Danlos syndrome in 2004, 12 years after my symptoms began. It simply isn't good enough, we must ensure that people no longer have to wait years to be managed and cared for. It is making people so much sicker than they need to be, it is killing people. 

To better manage my symptoms, walking and cycling have now become a regular part of my life and I have decided that the time is right to take up another challenge. Despite all the fantastic progression since we launched The Ehlers-Danlos Society in 2016 with the EDS Global Registry, EDS ECHO, the Hypermobile EDS gene study (HEDGE) and the fantastic work of the International Consortium, there is still so much to be done. We want to get to a time where geography and wealth no longer determine your quality fo life with EDS and HSD. I want to tell people I live with EDS and for them to know what it means. 

I am going to join our Chief Scientific Officer, Prof Fransiska Malfait, in her challenge to cycle from Cambodia to Vietnam in February 2020. Despite various problems from my EDS, I have been given medical clearance to begin training and I plan to reach the finishing line for all of our community, just like I did in 2011, and raise as much awareness as I can.

Anything you can contribute to this will go towards us making things better for those living with EDS and enabling The Ehlers-Danlos Society do essential research and change lives. Our strength begins with hope. Thank you so much for your support, it means the world.

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