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Canterbury woman and former Rochester pupil with 'suicide disease' feels like she's burning alive

A young woman who suffers with a cruel condition often referred to as the "suicide disease" feels she is being "burned alive" on a daily basis.

Millie Martin, who lives in Chartham, has been diagnosed with complex regional pain syndrome (CRPS) - which is ranked among the world's most painful incurable conditions.

Millie Martin, who lives in Chartham, before she was diagnosed with CRPS. Picture: Millie Martin
Millie Martin, who lives in Chartham, before she was diagnosed with CRPS. Picture: Millie Martin

It means walking for the 22-year-old feels like her feet are being placed in hot oil, and something as small as a fly landing on her skin leaves her in excruciating pain.

Among the many other conditions she has developed is a water allergy, which leaves her feeling like she is "being shot by a thousand bullets" when she takes a shower.

Sweating causes red rashes to form under her armpits and crying causes her face to swell - which is a vicious cycle given how much distress her condition causes her.

She also suffers from persistent itching and burning sensations, which cannot be relieved no matter what she does.

Weakness in her limbs has robbed her of the ability to walk or stand up so she has to crawl, causing damage to her knees.

Millie, who attended the Thomas Aveling School in Rochester, has bravely spoken to KentOnline about her daily battles with the pain and how it has changed her life.

"Every part of me feels on fire, or that I’m burning alive and dying," she said.

"It is scary and it makes me so upset because there is nothing I can do to take the pain away.

"Due to how severe it is, I have got to the stage where I don’t care if I don’t wake up in the morning because at least I wouldn’t have to suffer and go through the pain.

"I don’t know how to cope any more and I feel useless or that I’m a failure.

"Not wanting to be here and to rather be dead is hard.

"It is like a severe stabbing and shooting pain across my body.

"It feels like someone has set me on fire and all of my wounds are being rubbed with sandpaper."

Millie Martin, who lives in Chartham, in hospital for treatment. Picture: Millie Martin
Millie Martin, who lives in Chartham, in hospital for treatment. Picture: Millie Martin

CRPS, which is poorly understood, causes a person to suffer persistent severe and debilitating pain.

Medical experts have found it to be more painful than childbirth or having a limb amputated.

It is often referred to as the "suicide disease" in the United States as it can lead to those with the condition taking their own lives to escape the constant pain they face.

Before the first symptoms appeared when she was 17, Millie had her whole life ahead of her.

She was appointed head girl at school, was studying towards her A-levels, and had a good group of friends and a part-time job.

When she started suffering pins and needles, she did not think anything of it.

But after developing bruising on her thighs and problems with her balance, she knew something was wrong.

And in September 2017, on her second day at school following the summer break, both of her big toes started burning - causing her to cry out in agony.

Millie Martin's swollen face caused by the condition. Picture: Millie Martin
Millie Martin's swollen face caused by the condition. Picture: Millie Martin

Millie's mum, Natalie Taylor, says her daughter begged her to sleep in her bed that night as the "pain was so bad she thought she was going to die".

She was taken to hospital, where she stayed for five weeks, but doctors were stumped over what was happening to her body.

"If a fly was to touch her body, she would be in serious pain - it is that extreme," Millie's mum said.

"The level of pain clothing will cause to her body is like 1,000 wasp stings.

"She can’t regulate her body temperature so the bottom-half of her feet are freezing cold.

"The top-half of her body continuously sweats, and because she is allergic to water, she will get blisters across her skin.

"Her feet burn and that is where she gets the most pain.

"It can feel like they’ve been touched by 1,000 stinging nettles, they go bright red and it feels like they’ve been put in hot oil.

"They swell up in the summer and they freeze in the winter.

The damage caused by itching and scratching. Picture: Millie Martin
The damage caused by itching and scratching. Picture: Millie Martin
What sweating does to Millie's armpit. Picture: Millie Martin
What sweating does to Millie's armpit. Picture: Millie Martin

"We could not make her a cup of tea and let her hold it as it would severely burn her."

After five weeks of being pumped with various drugs, Natalie made the difficult decision to discharge her daughter as she feared she would be "institutionalised".

But she was soon admitted to the Evelina Children's Hospital, where she stayed for two years.

She was diagnosed with CRPS as well as allodynia, which means she is extremely sensitive to touch.

However, after being discharged, the mum and daughter say they have been left on their own to fight the condition.

Millie's water allergy means any liquid on her skin can cause severe itching.

"When I have a shower, it feels like I’m being shot by 1,000 bullets at one time," she added.

"If I have a bath, it feels like sitting in hot oil but if I have a shower it feels like I’m being shot to death.

Millie Martin suffers from a range of symptoms, including burning sensations and itching. Picture: Millie Martin
Millie Martin suffers from a range of symptoms, including burning sensations and itching. Picture: Millie Martin

"Even after I’m out of the water, I will be screaming in pain hours later because of itching and burning so it is really distressing.

"Having a shower, which is a normal daily activity, is the worst thing in the world for us.

"If I sweat or cry, it starts to sting, burn and itch as well as causing my face to swell."

Natalie added that washing her daughter is the "hardest thing" to do.

"She is a 22-year-old girl and she has to drip dry as we can’t put a towel on her because she is screaming in pain," she said.

"As a mum, having to do that to your daughter knowing you are causing that pain, there are no words.

"She is telling me to stop but I can’t as I have to make sure she is clean as she’ll get infections."

The damage caused to Millie's knee due to having to crawl. Picture: Millie Martin
The damage caused to Millie's knee due to having to crawl. Picture: Millie Martin

Millie had to fight to complete one of her A-levels in hospital, for which she remarkably secured an A*.

She could not write the exam so she put herself through excruciating pain to type it on a computer.

But over the years, her memory has deteriorated to such an extent she cannot read and lives a solitary life.

Her illnesses have also left her suffering from post-traumatic stress, anxiety and depression.

Millie said: "My independence, my friends, my school and driving lessons were all taken away from me.

"I didn’t have any support and it was just me and my mum.

"It was so lonely and I wouldn’t wish it on anyone."

Millie Martin, who lives in Chartham, before she was diagnosed with CRPS. Picture: Millie Martin
Millie Martin, who lives in Chartham, before she was diagnosed with CRPS. Picture: Millie Martin

The family has spent up to £10,000 on funding private health treatment.

Millie is taking 10 different drugs a day in a bid to relieve her symptoms, as well as being on a medical cannabis trial.

She has previously been given ketamine and lidocaine infusions, which are both anaesthetics, to reduce her pain.

Natalie says she has contacted every consultant who specialises in CRPS in the UK, but they have all judged Millie's needs to be too complex.

Now, they are trying to raise £100,000 through a GoFundMe page for treatment at the Spero Clinic in the United States, which offers a unique rehabilitation program.

Natalie added: "She tells me daily, ‘I don’t want to die, mum, but I don’t want to live my life like this any more’.

"I get so scared she is going to do something that we have to hide her medication.

"There is no hope now because we have exhausted everything we possibly can."

For confidential support on an emotional issue, call Samaritans at any time on 116 123.

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