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Megan Lewis

Marathon Walk - 26 Miles

Challenge complete

Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.

Total raised so far £0.00

Target £0.00

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Raised offline: £0.00

My story

[p]Hello everyone,[/p][p]Thank you for taking the time to pop over here to my fundraising page.[/p][p]So you may be wondering what Hypermobility or Ehlers Danos actually is....[/p][p]http://hypermobility.org/help-advice/[/p][p]In simple terms....i dislocate or sub-lax my joints pretty much everyday. At this moment in time, i have dislocated pretty much every joint in my body, including my ribs. I have become an absolute pro at relocating them. But i also have problems with my heart and lung function. Which can make me considerably poorly. If my body becomes to fatigued, i suffer from non-epileptic seizures. [/p][p]In 2009 i underwent surgery on my loose shoulder, the surgery didn't work. Two years later i was diagnosed with Hypermobility by a hand physio. Nothing more was said or done. [/p][p]Two years ago, i was suffering from crippling back pain, loss of feeling and use in my right leg, with only constant pins and needles to keep me company. Addenbrookes found chronic nerve damage in my back...yes Hypermobility can cause nerve damage at random. But no healthcare professional i saw, knew this. Nor did anybody explore my hyper mobility further. It wasn't until i went to my GP with al my research that she confirmed i was right in my diagnosis. Since then i have seen numerous professionals to try and manage this condition. Some great, some bloody atrocious.[/p][p]This year we have discovered that i have issues with my lung and heart function. This signals that i actually have Ehlers Danos. Something i am still undergoing tests for. There is 1, just 1, Specialist clinic in the UK for these conditions. The waiting list for appointments is loooooonnngggggggggg.[/p][p]I have really had to fight to get support, help and belief with my condition. Anything i have learnt has been due to my own research and support from the Rheumatology team at Peterborough hospital. The past 3 months has been the only time i have come across 2 doctors who actually understood hyper mobility and questioned/ asked if i had Ehlers Danos. One DR from Peterborough A&E and one is my new GP. [/p][p]My new GP asked if i had ED, after reading my notes which don't even mention ED what so ever. She had the knowledge to instantly pick up on my problem! She genuinely asked how on earth i had got to the age of 28 without being diagnosed! [/p][p]But thats the problem, hardly any healthcare professionals are taught or educated on these conditions. These serious conditions that can rob you of your mobility and cause a whirlwind of pain. [/p][p]HMSA is fundraising to provide toolkits and training to UK GP's. Something which is urgently required.[/p][p]My condition is most likely genetic, i will probably pass this on to my children. The thought of which i do struggle with, because right now, there is F*** all support for people. So please help me to change that! [/p][p]I will be walking 26 miles through London on the 22nd September 2018. ( I'm unable to run as its to much impact on my joints) [/p][p]I really hope you will support me in my mission. Seeing as my hips, knees and ankles dislocate, this is going to be quite an interesting challenge for me. But lets get cracking....literally in my case. Lol[/p][p]Thank you![/p][p]Meg x[/p]

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