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mind, body & EDS

| living with a rare, invisible, genetic disease |

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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!
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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.

BREAKING NEWS: DIAGNOSIS OF BRAIN BLOOD CLOT

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After being sent for an emergency MRI brain scan last week due to my neurological symptoms worsening, I have unfortunately been diagnosed with CVST (Cerebral Venous Left Sinus Thrombosis) which is a rare blood clot in my brain that affects 5 in 1 million people per year.

I have a major blood clot on the left venus side of my brain and left jugular vein which is completely obstructing blood flow and drainage which is life-threatening.

I was told that if this was not discovered when it was, the chances of me still being alive today was near impossible.

Continue reading “BREAKING NEWS: DIAGNOSIS OF BRAIN BLOOD CLOT”

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