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 •