My First Blog Post – A Starter for Ten

I want a normal chance at life… I want to be as normal as can be… I want the same as others have… I want help with my life changing illnesses… I want to be treated human…

… but most importantly, I do not deserve to die!

At the ripe ole age of 35, I find myself counting each day that passes as another day of suffering. I’ve been very very ill since aged 14. Uncommon illnesses and diseases have plagued my health and life. Incurable but very much treatable conditions dominate and dictate my lifestyle and routines. My name is Ali Eyers, I live in what many consider one of the most beautiful places in the world (Cornwall, SW England) but yet I wish I could fly away from the ‘Toxic Few’ within the NHS, spread across multiple and all organisations relating to my health (incl NHS England) and social care, who make up the Multi Disciplinary Team (MDT) that are simply discriminating, mislabelling, stripping me of my human rights and dignity and intentionally pushing me to suicide. The MDT are blocking treatment, investigations and withholding life saving physical and mental services.

My Conditions:

I’m 35 years old yet my body feels like it’s 75 years old – This is the effect of my incurable genetic condition Ehlers Danlos Syndrome (EDS)

Confined to my bed since an early age, I have suffered many Cerebral Spinal Fluid (CSF) leaks caused primarily due to my EDS. In the words of the world renown CSF leak and Spontaneous Intracranial Hypotension specialist, Dr S at Cedars Sinai, the collagen defect from my EDS has manifested in a dura (sack that hold the CSF fluid that cushions the brain amongst other things) that is likened to ‘wet tissue paper’; prone to tearing and crippling debilitating pain in the head, relieved slightly when lying flat. www.csfleak.info

PoTS (Postural Tachycardia Syndrome)

Voices – influencing everything I do and think

TBC TBC