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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Fundraising

“Hitting the wall” – London Marathon

I believe that there is power in suffering and chronic illness because it’s in these times of pure vulnerability that we learn how to overcome what seems the ‘impossible’, not just for ourselves but for others too.

By experiencing our own pain of “hitting the wall”, we can understand and care for the pain of others. In our chronic illness journeys, we encourage each other to keep fighting, to continue learning, to never give up – but we rarely talk about “the wall”.

Continue reading ““Hitting the wall” – London Marathon”

The Power of Thought

 

Whenever I share my medical journey, I repeatably am faced with, “I don’t understand how you’ve survived; I don’t get how you were able to relearn how to walk/read/write again; how have you made the impossible, possible?” So here it goes, I’m going to share a part of my truth with you and how I’ve been able to get to where I am today in the hope of enabling others in all walks of life…

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‘Patient Story’ Speech

“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”

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UPDATE: First Post-Op Visit Results

My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.

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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

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!
Continue reading “Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!”

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.

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