When Sally Schofield turned 50 there were no birthday surprises - because they could have killed her.

A rare condition means the former marathon runner and school department head could fall into a coma if she receives so much as a birthday card.

Mum-of-two Sally, 50, has Addison's disease. Her glands do not create vital hormones meaning any small amount of excitement could cause her to die.

Anything from going on holiday to being involved in a small car crash could spark an adrenal crisis which would cause her blood pressure and pulse to drop.

Sally, from Merstham, would then fall into a coma and eventually her heart could stop beating.

The former head of art at Ravens Wood School in Bromley, London, has had to give up her career and her hobbies and describes the constant monitoring and medication as "like walking around with a death sentence".

"My whole life has changed, the slightest thing is a potential battle," Sally told Mirror Online.

Sally suffer from Addison's disease and is raising money to buy her own drugs

"I've had to have counselling, it's been hard to come to terms with. It affects every minute of your life. 

"I have to be super vigilant about how I'm feeling and what I'm doing. I can go from feeling absolutely fine to needing immediate medical assistance in five minutes

"Banging your toe or cutting your finger, you have to updose."

One of the scariest things about the onset of a health crisis is the mental aspect, explains Sally, who lives in Merstham near Redhill in Surrey.

Donate via Sally's JustGiving page to support her fight for life

Sally with husband Steve in happier times

"I had a minor car crash last year and by the time I'd got out of the car to see what the other driver was doing, I couldn't speak. It was quite scary," she said.

"I get brain fog and can't articulate what's happening.

"I was just pointing at my glove compartment, at my tablets, I think the guy thought I was mad.

"I came home and the brain fog wasn't improving, I wasn't making sense, mumbling, withing ten minutes I was having convulsions.

"You can feel your body shutting down - your heart will eventually stop beating. Your body is looking for a hormone but it's not making it."

Have you been the victim of a cruel CCG postcode lottery? Email [email protected]

The condition is a constant worry and affects every part of her life
The slightest thing can set her condition off

She adds: "I couldn't have any surprises for my 50th birthday because could you imagine walking into a room and people going 'surprise!'"

Sally, mum of two boys aged 28 and 16, and wife to Citroën sales manager Steve, 53, is also haunted by terrible nightmares a fear of dying in her sleep due to her rare illness.

"The low cortisol gives me terrible nightmares," she says. "You get stressed in your sleep, you fear you won't wake up in the morning and wake up feeling really low.

"Imagine - your blood pressure is dropping, your heart rate is dropping, pulse is dropping, breathing slows down - all while you are asleep.

"When I'm close to a crisis I can't just go to sleep - it could be fatal."

Still smiling - but Sally says it's like living with a death sentence
Sally can no longer work

But thanks to the cruel NHS postcode lottery sparked by the introduction of local Clinical Commissioning Groups (CCG) by the Coalition Government's Health and Social Care Act in 2012, Sally has faced a major battle to fund life-changing - and life-saving - treatment.

Sally had to sell her car, clothes and even saucepans in a bid to fundraise for a drugs pump to give her her life back.

Her friends and family gave what they could to raise £3,000 for the pump, the size of a pack of cigarettes strapped to her body and which drips cortisol into her skin via a needle. It's a "game changer" for Sally.

But her local East Surrey CCG refuses to provide any money towards the pump, instead prescribing her hydrocortisone tablets. Only problem is, they make her ill, only last for 30 minutes to an hour and don't give her a hit of the drug when she needs it.

The little pump is no larger than a pack of cigarettes - but is a game-changer for the mum of two

This saw her described as 'the rarest of the rare' by an endocrinologist she sees in London.

"It's completely a postcode lottery," Sally said. "I know of a lady in Bristol who gets it paid for on the NHS, but my local CCG is not supporting any part of it.

"If we moved to Bristol we'd get it on the NHS. It's not fair, it shouldn't be that way.

"It completely perplexes me in every way. I will end up dropping down dead for this to change."

The pump drips the life-saving drug into her body when and where she needs it

Now she has the pump, Sally says the upkeep will cost around £10 a day, but the local CCG is silent on any help with the funding.

"The warranty will run out in three years, what do I do then? I'm desperate," says Sally.

"Once you become a victim of it, it's breathtaking how unfair it is.

"My life is dependant on a little black box strapped to me all the time, and you know it's going to run out."

The ongoing maintenance of the pump - for equipment including tubing, reservoirs, needles - works out at around £300-£400 a month.

And in the latest cruel blow, Sally is looking at selling her jewellery this month to stump up the cash.

The upkeep of the pump can be as much as £400 a month

Sally adds: "I'm looking at a lifetime of debt. I'm signed off as medically retired so I can't work. It's really stressing me out, having to find £300 a month to fund my medicine, to keep me alive.

"And I'm being passed from pillar to post. No-one's listening to me, it's so desperately unfair. I have got no voice.

"It's cost me my job, my career. I've funded the main part of it, I'm asking for support now, that's it.

"We can't keep fundraising forever. It should be the NHS - I've worked and paid tax all my life. Somebody should be answering for this."

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An East Surrey CCG spokesman said: We are looking into the circumstances of this case and feel it would not be appropriate to comment on this individual case whilst this is taking place.

"Our aim is to ensure patients access evidence-based, clinically appropriate treatment. Decisions about when or whether a patient should have a treatment are made by clinicians, are based on best practice clinical guidance and take into account each individual’s unique circumstances."