Search

mind, body & EDS

| living with a rare, invisible, genetic disease |

Tag

Donate

“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.

Continue reading ““No Pain, No Gain””

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!

Continue reading “Lumbar puncture, road trip to Virginia and tornadoes!”

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!”

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

DONATE BY CLICKING HERE

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).
Continue reading “#CareForLaura Wristbands – Show Your Support”

THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED

PLEASE SUPPORT BY DONATING HERE. I am in need to medically crowdfund £190,000 for all 3 EDS neurosurgery medical expenses and rehabilitation treatments.

Since recovering from my second surgery for Tethered Spinal Cord Syndrome done on 17th February by specialist EDS neurosurgeon in Washington DC, I have been undergoing further specialist clinical tests and MRI’s for my lower neck. I have been losing sensory function of my left arm throughout this past year and the specialist Upright MRI equipment they have here in the USA has finally revealed that I will unfortunately be needing a 3rd neurosurgery on Tuesday 12th of April 2016 in Washington DC by the same specialist EDS neurosurgeon. Continue reading “THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED”

Blog at WordPress.com.

Up ↑