'I am so desperate to get out of this situation' - Cannock Wood man with rare skull condition
A man from Cannock Wood whose skull is literally detaching from his body has launched a plea for life-saving surgery and to raise awareness of his and others' plight.
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Wheelchair-bound Connor Edwards has been diagnosed with Cranio Cervical Instability (CCI) and Ehlers-Danlos syndromes (EDS) as well as Lyme Disease and has no quality of life, to the point where he is considering going abroad to help him end his life.
The 30-year-old lives with his partner in a bungalow. He went with him to Barcelona to be diagnosed by one of the top neuro surgeons in Europe - his approaches to the NHS doctors in the UK have been rebuffed to the point where they have said nothing can be done for him.
He said: "My story started around four years ago when I was mountain biking on Cannock Chase and felt a tick attach itself to me.
"From that simple thing my health went rapidly downhill from burning in my hands and feet, to severe fatigue to the point where I can't walk anymore and I am confined to a wheelchair around 20 hours a day.
"EDS is a rare genetic connective tissue disorder that affects the collagen in the body — the very substance that provides strength and stability to our joints and organs.
"A catastrophic consequence of the EDS is CCI where the skull becomes unstable and begins to shift on the top of the spine - in my case, it is not an exaggeration to say that my head is quite literally falling off.
"This instability is causing me excruciating pain, frequent seizures, neurological symptoms, and severe disability.
"My head no longer sits safely on my spine, and it is crushing vital structures like my brainstem and upper spinal cord.
"I am wheelchair-bound, unable to care for myself, and my immune system has become profoundly compromised.
"As if this weren’t already unbearable, in 2023, I was also diagnosed with Lyme Disease via a specialist laboratory in Germany — a condition that further complicates my health and adds to my immune dysfunction."
Connor was assessed by Dr Vicenc Gilete, a renowned neurosurgeon and spine surgeon who confirmed the severity of his condition and said he needed urgent cranio-cervical fusion surgery to stabilise his head and neck and prevent further damage or potentially fatal consequences.
Connor added: " He has described my case as one of the most severe he has ever encountered — and he sees many patients with this condition.
"I am getting to the point where I am thinking of going to Digintas to try and end it if I can't find a solution which it seems does exist but at the moment seems unobtainable."
Connor has the support of Cannock Chase MP Josh Newbury who is going to highlight his plight in Parliament and has set up a gofundme page where people can contribute towards the cost of potential treatment.
Mr Newbury said: "I am in talks with two charities including Ehlers-Danlos Support UK to see what can be done to support Connor and I will be visiting him in the near future.
"The issue was discussed fully in parliament just before the last general election and it is a case partly of raising awareness because it is a complex subject and the NHS has to deal with a lot of those but I will do all I can to highlight his plight."
