mind, body & EDS

| living with a rare, invisible, genetic disease |


October 2017

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 •

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