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Change: The Battle of Acceptance

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“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.”  • Laura Lee •

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Jetting Off to D.C. 

Time to jet off back to Washington D.C. for my first official post-op neurosurgeries and brain surgery check-ups! I’ll also be attending some Gala events and will update you on my patient advocate role soon. Keeping my fingers and toes crossed that our 3 weeks stay won’t turn into an unexpected 9 months this time around…Wish me luck! 🇺🇸✈️

#FourMonthCheckUp #Neurosurgeries #BrainSurgery #EDS #SpinalFusions #Chiari #ICH #BrainClot #Stents #HealthJourney

“No Pain, No Gain”

September is ‘Pain Awareness’ month and highlights the importance of spreading awareness of chronic pain and reducing the stigma that people with chronic pain face both in our healthcare system and society. It is also ‘Invisible Illness’ week and I would like to emphasise that there are hundreds of millions of people in the world with invisible illnesses that feel misunderstood by everyone. Unfortunately, living with Ehlers-Danlos Syndrome means living with chronic pain – which is one of many common symptoms. This invisible disease comes hand-in-hand with invisible chronic conditions that will follow us forever. All we need is for people to understand and accept us.

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Lumbar puncture, road trip to Virginia and tornadoes!

Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

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Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!

‘Upstream’ is an international global oil and gas newspaper and in this weeks edition published today, Friday 13th May 2016, my appeal of needing to medically crowdfund £300,000 due to my recent diagnosis and surgical treatments needed for my CVST Brain clot, appeared in the “Cuttings” Section. I am so grateful for having the opportunity to have my appeal published  globally and spread awareness of my rare genetic disease, Ehlers-Danlos Syndrome & PoTS. A huge thanks to ‘Upstream’ newspaper and to those who made this get published happen!
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What an incredible success this concert was raising a grand total of £2105!!! I can’t thank the Frensham Heights Peripatetic Teachers enough for their efforts in putting on fantastic performances from such a range of musical genres – I hear and have seen from some videos. My mother and I wish we could have been there to enjoy such a talented range of musicians.

UPDATE: Raised Goal to £300,000

Due to my recent diagnosis of CVST (Cerebral Left Vein Sinus Thrombosis) Brain Clot, I am needing to undergo further surgical procedures and take medicated anticoagulant injections twice daily. We have needed to raise our goal target to £300,000 because of the unforeseen urgent medical treatment I need which includes: a haematological blood clot study examination, lumbar puncture on Friday May 20th to test the CSF pressure, and most likely brain surgery to remove the clot and put a stent in to prevent any further clots from forming in the future. This total also includes the 3 critical and lifesaving neurosurgeries and post-op rehabilitation expenses. Every little counts. If you are able to help in any way by donating clicking here, sharing my updated story, and helping to spread awareness of EDS & PoTS, then please do so. We would be forever grateful as a family so I can finally be brought home to England to recover further and resume my MSc at Imperial College.

MAY: Ehlers-Danlos Syndrome Awareness Month

May is dedicated to Ehlers-Danlos Syndrome (EDS) Awareness month, when everyone across the world with or without Ehlers-Danlos can come together and help spread awareness to the medical world of this invisible disease, help educate the public, and help donate towards further research to find a cure and understanding for this varied “zebra striped” community. Please click: ‘Ehlers-Danlos UK’ Charity to see how you can help contribute to “making our invisible visible”. With no action, there will be no change. There are still many people who are suffering from EDS but are undiagnosed/misdiagnosed due to lack of awareness in the medical and public community. You can help change this for the better by sharing my story and telling people about what it is. Do something positive to make change happen!

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