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Dealing with Pre & Post Surgery Anxiety

Having a total of 5 surgical procedures all within a 6 month period (3 major neurosurgeries, a lumber puncture and brain surgery), there is no doubt that both my mind and body have suffered from severe anxiety and stress. Prior to having all these surgeries, I had some experience when having bilateral knee surgery (both knees done at the same time) in 2012. So I thought going through surgery once before meant I would be as cool and calm as a cucumber – but I can honestly say that each surgery was a completely different experience and is just as nerve-wracking.

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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.

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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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”

UPDATE: Third Neurosurgery Success & Discharged

Great news to share with you all: the neurosurgery was successful and I was discharged from hospital the day after (Wednesday 13th April) and will update you all on more details about the neurosurgery and my recovery next week. I am struggling a lot with the amount of pain I am suffering with, but am trying to rest as much as possible to start the healing process. My immediate family are here, and I am so grateful for their and all of your support, love and care. 

Third Critical EDS Neurosurgery Appeal Video

“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.'” Eleanor Roosevelt

#CareForLaura Wristbands – Show Your Support

As a “thank you” to those who have helped Laura on her way to a new life, there is, on offer, a token of appreciation in the form of a #CareForLaura wristband.  Wearing one will be a reminder of what has been done, and what continues to be needed, for Laura and her family. If you have not donated yet and wish to contribute to Laura’s Third Critical Neurosurgery (12th April in Washington D.C.), please donate a minimum of £10 to Laura’s medical crowdfunding YouCaring site and you will receive a wristband (please read details below).
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RECENT UPDATE: Possible 3rd Neurosurgery for Laura

Unfortunately, we found out in the follow-up appointment this past week that I have a herniated disc between C6-C7 vertebrae and further instability with overstretched ligaments between C6-T1 vertebrae (due to my EDS). This is causing me significant pain in my neck and will most likely need to be operated on. Continue reading “RECENT UPDATE: Possible 3rd Neurosurgery for Laura”

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