Search

mind, body & EDS

| living with a rare, invisible, genetic disease |

‘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’.”

Continue reading “‘Patient Story’ Speech”

Featured post

Homeward bound: Laura discharged from #6 Neurosurgery!

“Be proud of all your scars. They are badges of honour you’ve earned from the challenges that life has thrown at you. Your scars are a sign of strength and resilience. A sign that you chose to keep surviving” • Laura Lee •

It’s discharge day! Wow, what a relief after the last three days of major post-op struggles and suffering from typical EDS crashes including severe dystonias, dysautonomia and adrenal insufficiency attacks, and pain like no other – exhausted doesn’t even begin to describe how my body is feeling. You’d think this being my 6th neurosurgery it would become easier, but each time it gets more difficult as my body becomes more fragile. This is just the beginning of a long journey of further surgeries that lie ahead of me. But, here’s to being the first EDS patient in the U.K. to undergo these series of pioneering brain and neurosurgeries – I’m hopeful that this new path of treatment will help restore the necessary bloodflow to my brain and neck and give me another chance at life. I choose to keep trying because there’s so much more life I have yet to live. Thank you for all your incredible love and support from across the world, each one of you gives me the spark of hope I need to keep going.

#zebrastrong #nevergiveup #hope #brainsurgery

UPDATE: Laura’s in recovery from her 6th brain surgery!

From Rochelle (Laura’s twin sister):

She’s only gone and done it again! Laura has pulled through her 6th neurosurgery but her first in the UK! Selfishly, it’s amazing that she’s so close to home and fortunately the standard of care has been amazing thus far in consideration of her EDS (apart from the NHS bed shortage scare this morning which meant her surgery almost didn’t happen today 🤦🏼‍♀️). Most importantly, the surgery all went to plan and she is expected to be discharged tomorrow ☀️ She’s been in good spirits both pre- and post-op👇🏻

Preparing for 6th Brain Surgery on 18th April

“Bravery is the audacity to be unhindered by failures, and to walk with freedom, strength, and hope, in the face of the unknown.” 🦋

This last month has been a complete blur. Only now am I beginning to realise the extent of the reality that faces me since being told I’ll be undergoing my 6th brain surgery in just over a week in Cambridge (U.K.), on the 18th April.

This will be the beginning of many more pioneering brain surgeries that await for me in the years to come, to attempt to fix the severe blood flow problems in my brain and neck.

The planned surgery is to remove delicate spinal bones that are compressing major veins and arteries at the base of my skull and top of my spine; specifically, my left styloid and left C1 transverse process. I’ve been advised and told that my initial recovery from this surgery will be at least 6 weeks.

Thinking that things couldn’t get any worse, I received a call from my US neurosurgeon a few weeks ago informing me that I have more serious instability problems in my spine that is compromising my spinal cord and explains the worsening of my symptoms.

I’ve been reluctant to say anything about this because, in all honesty, I think I’ve been in a state of shock and denial – I truly didn’t want to believe that what I was being told was real.

I’ve been continuing my day to day life, finishing off my thesis whilst working as a geoscientist, balancing osteopathy, pain management and other specialist appointments, whilst socialising and going out with family and friends, and keeping up with my gym and physio routine – trying to distract myself, to try and feel as “normal” as possible.

All my closest family and friends know how dedicated I am towards my rehabilitation physically and mentally, and being told that there are new problems compromising my life is beyond heartbreaking. To accept this is even more incomprehensible and I really don’t want to believe it.

I admit that I am scared of what lies ahead of me…the thought of what if I never feel better…and what if I have to live feeling this way forever?

This isn’t living, it’s surviving – but reflection is what has saved me.

To be reminded of how much I’ve already gone through, that my positive mindset and persistence has given me the opportunity to relearn how to walk/talk/read/write in just under a year, gives me the hope that I have the strength somewhere within me to get through this next obstacle that faces me.

That the impossible is actually possible if you just believe ✨

• Laura Lee •

Admission to Cambridge 

When life gives you something that makes you feel afraid, that’s when life gives you a chance to be brave • A normal 20 minute catheter angiogram procedure actually turned into over 2.5 hours of tests and investigations. Overall, the angiogram revealed a lot of complex problems and complications with the blood flow in my brain and neck which explains the recent decline of my health. It’s disheartening to hear that my body is failing me, but I am forever hopeful that the specialists will be able to provide pioneering surgical treatments. This is by no means a cure, but instead a way of managing a chronic disease to save and better my quality of life. The new year ahead is certainly going to be a challenge but I have faith that at least there are specialists here in UK willing to push pioneering medical treatments for EDS patients. Thank you for your continued love, prayers and support ✨🦓🏥🦋 • Laura Lee • #zebrastrong #nevergiveup #hope #spoonie

ICP Bolt Neurosurgery 

She’s been through more hell than you’ll ever know. Shes been broken. She’s been knocked down. She’s been defeated. She’s felt pain that most can’t handle. Some days, she has no idea how she’ll do it. Every single day she decides to look fear in the face, yet she never runs away. She always finds a way to get back up. She always finds hope. She’s unbreakable. She’s a fighter. She’s you.


This morning I underwent ICP bolt neurosurgery. For the next few days, the specialists will be examining and investigating the fluctuation of pressures in my brain. We are hopeful that this is another “stepping stone” towards a diagnosis and treatment plan from my recent degradation. Thank you all for your love and support 💗

 • Laura Lee • #zebrastrong #nevergiveup #hope

Transferred to National Hospital of Neurology and Neurosurgery at Queen Square London

“For the highs and lows and moments in between, mountains and valleys, and rivers and streams, For where you are now and where you will go, For “I’ve always known” and “I told you so, “For “nothing is happening” and “all has gone wrong,” It is here in the journey you will learn to be strong, you will get where you’re going, landing where you belong” 

– Morgan Harper Nichols –
Relieved and exhausted, I’ve finally been transferred to The National Hospital for Neurology and Neurosurgery at Queen Square London. Please keep my family and me in your thoughts and prayers for the next few days as we embark upon this next phase of investigations. Thank you all for your love and support, you are giving me the strength and hope I need to get through this difficult time of unknown ✨🏨🦋• Laura Lee •

Relapse in the U.K. 

Sadly, I was admitted to hospital on Monday due to a fast deterioration of unexplained neurological symptoms. Currently, the doctors here don’t know what’s causing my decline. Their lack of knowledge and expertise with EDS, even questioning the validity of my diagnoses and lifesaving surgeries has been heartbreaking. 
It is still not determined whether my shunt or three brains stents are patent or even functioning properly. This is concerning for each day I am getting worse, especially because I’m losing my peripheral vision, losing sensation and experiencing painful nerve “shocks” in both legs, and losing the ability to walk. 

My US specialists and family are desperately trying to have me transferred to the leading U.K. stent and shunt neurosurgical unit in Cambridge. We are hoping this will happen in the next few days. 

We would appreciate all of your thoughts and prayers to help my family get through this difficult time. 

I’ve made incredible gains these last few months getting my life back on track with work and beginning to finish my masters, continuing my patient advocacy, juggling numerous appointments, following a strict exercise regime towards my initial recovery, whilst trying to live and do things that every 24-year-old would do. 

But, this is a stark reminder that life is unpredictable and I think one of the worst parts of living with a chronic disease is how it sometimes does breaks you. No matter how much you work towards getting stronger, sometimes the fight isn’t enough – but in no way has it made me lose my smile and belief in hope • Laura Lee •

Vlog: VP Brain Shunt Update & Recovery

Hello All! I have put together a vlog compilation of 5th brain surgery, post-op checkup and general update on how I am now feeling since being fitted with a VP shunt. Have a watch to see how I am progressing with my recovery and the watch how a VP shunt is readjusted to a different setting…

Homeward Bound

Homeward bound ✌🏼🇬🇧  Often when you think you are at the end of something, you are actually at the beginning of something else.

Each one of us EDS neurosurgery and brain surgery survivors find ourselves having to start over with almost every aspect of our life. But I like to look at this as every ending is a new beginning. A new beginning that holds great possibilities and most importantly, hope.

Continue reading “Homeward Bound”

Blog at WordPress.com.

Up ↑