mind, body & EDS

| living with a rare, invisible, genetic disease |

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”

Vision Therapy Results!

So yesterday was a pretty emotional day. It was a day that I will cherish forever and is evidence of what can be accomplished if you set your mind on any goal in life – a combination of determination, persistence and most importantly, hope.
My vision therapy examination results (communication of how the eyes translate information to the brain) were beyond believable and even the specialist was dumbfounded and couldn’t believe the amount of progress I’ve made in just a few months…for the first time ever, my results came back as “normal”!

Continue reading “Vision Therapy Results!”

‘Dazzle Together’ for May – Ehlers Danlos Syndromes Awareness Month

May is Ehlers Danlos syndromes awareness month🎗Ehlers Danlos syndromes are unexpected in the medical world because they are rare, mid-diagnosed and under-diagnosed. 

“When you hear hoofbeats, it really is a zebra.” 

The zebra is a symbol of EDS. No two zebras have identical stripes just like no two people with EDS are identical. A group of zebras in the wild are called a dazzle – that’s why every May we all assemble to be stronger and dazzle together to raise awareness ✨ 

Please consider donating to The Ehlers Danlos Society that will go towards funding research to find a cure 🔬 

What are you doing to show your stripes and support? 

Love wearing my beautiful handmade EDS awareness bracelet made by and given to me by one of my dear zebra friends, Christina. Go get one to show your support by visiting her Etsy shop here

#DazzleTogether #DazzleYourCommunity #EhlersDanlosSyndromes #EhlersDanlosAwareness #TheEhlersDanlosSociety #EDS #edsawarenessmonth #ZebraStrong

Why I Smile…

I smile because miracles happen every day. I smile because I have survived yet again. I smile because this neurosurgeon has saved my life and has given me another chance to live and pursue my dreams. I smile because even though this invisible disease is incurable, he has set me free from the struggles and life-threatening complications living with a progressively sick brain. I smile because he has given me the ability to believe in hope again, the strength to never give up, to keep fighting and advocating because it’s always worth it. Even though our disease may be rare, we still matter. Whilst so many other doctors worldwide are not willing to believe this epidemic is real, I am eternally grateful to Dr Liu and his team at UVA who do. Even though there are still so many “I don’t knows”, “what if’s” and “I’ve never seen this before”, they are willing to go above and beyond to provide pioneering treatments to complex EDS patients with unsolved brain problems to better our quality of life. You truly are an extraordinary human being, what I like to call a “hero” 💫🙌🏼🇺🇸

UPDATE: Laura out of surgery #5

Well, she did it! Defeated neurosurgery #5 with flying colours and a highly pressurised spurt of cerebrospinal fluid when the surgeon drilled through her skull! Fingers crossed she starts to feel the benefits tomorrow morning 🤞🏻Thanks so much for everyone’s support during this seemingly never-ending journey with Laura 🌼

Love Rochelle (Laura’s twin sister)

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