'People think I'm drunk because of my rare illness'

The ability to breathe, regulate our temperature and even digest our food without thinking about it is something most of us take for granted.

But for 69-year-old Eddie Robinson, who was diagnosed with Pure Autonomic Failure (PAF) five years ago, his body's inability to control these typically automatic processes means he deals with a range of difficult symptoms.

These include feeling so dizzy he passes out - sometimes leading people to think he is drunk - as well as being unable to sweat or sleep undisturbed.

"I'm one of 180 patients [with PAF] that are known to the medical profession [in the UK] - most GPs have never heard of it because it is so rare," he said.

The NHS lists PAF as one of a group of autonomic disorders which affect the body's ability to control things it should be able to do automatically. It is often linked with conditions such as Parkinson's disease and a form of dementia called dementia with Lewy bodies.

Eddie's symptoms began with episodes of fainting and dizziness as early as 2010, but they got steadily worse and he finally went to the GP in 2018.

He was eventually diagnosed in 2021, and was told there was no cure for the condition - only treatments for the symptoms.

"It's a degenerative condition," Eddie, from Warwickshire, said. "I'm not going to get any better and we just simply don't know where it's headed."

Another of the processes affected by his condition is an inability to keep his blood pressure high enough, meaning he has to take what he described as a "cocktail of drugs and injections". Even then, he still deals with frequent blackouts.

A lack of control over his body temperature has also made life hard over the summer heatwaves.

"I suffered terribly in this last summer because I can't cool myself," he said. "I don't sweat at all, which was quite shocking."

Eddie and his wife Suzie now want to raise awareness of the condition, and say they are "convinced" there are more people that have not been able to get a diagnosis.

Professor Valeria Iodice, consultant neurologist at University College London Hospitals (UCLH) - the only specialist centre for PAF in the UK - agrees.

"We strongly believe that there are patients - we don't know how many - that haven't been identified," she said.

"At the moment there is nothing that stops the progression, that stops the disease," said Dr Giacomo Chiaro, who is also a consultant neurologist at UCLH.

"These are extremely, multifactorial complex conditions, where we don't really understand the exact mechanism that's initiating and driving the neurodegeneration."

Suzie and Eddie have set up a Whatsapp group supporting 50 people living with, or caring for, someone with PAF and they hope to start a charity too.

"Our aim would be to get leaflets out into the wider community and say 'look, if this person looks drunk, faints or falls, [PAF] could be a possibility;," Suzie said, describing the condition as an "invisible illness".

"Family and friends don't know what it is like to live everyday life with it - they say they do [but] they don't know," she added.

Eddie said: "It's very isolating when you don't know who to turn to."

Iodice also believes more awareness would help patients.

"This is a rare pathology, but there are also difficulties in making the diagnosis, so whatever can be done to raise awareness it would be extremely well received by the patient community," she said.

Iodice, who is also the president of the British Autonomic Society, said while research into PAF had come a long way, there was much more to do.

"We are in a much better position now than we were 10-15 years ago. We can see that in the increased rate of the referrals, so that is positive," she said.

Eddie also wants to keep supporting research, even after his death.

"I've also donated my brain and brain stem to the brain bank in London... but not until I'm finished with it," he said.

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