Young woman diagnosed with ‘suicide disease’ faces race against time
- Amelia Martin, now 23, was diagnosed with Complex Regional Pain Syndrome
- It has caused debilitating and constant pain across her body since she was 17
A young woman diagnosed with ‘suicide disease’ aged 17 is facing a race against time as her family try to fund treatment for her debilitatingly painful condition.
Amelia Martin, from Canterbury, Kent, was diagnosed with Complex Regional Pain Syndrome (CRPS) – which causes such constant severe pain it can lead sufferers to consider taking their own lives – after symptoms first appeared in September 2017.
While seeing her grandmother after school, Amelia, now 23, suddenly began crying and screaming in pain, so her mother Natalie, 48, was called to pick her up.
At random times, Millie would feel the sensation of pins and needles and even her skin burning – and her symptoms only got worse.
‘She kept saying her toes are burning. She wouldn’t let me touch her. She said she felt like she was going to die, Millie’s mother Mrs Martin, a beauty therapist, told The Independent.
Amelia Martin (pictured before her diagnosis), from Canterbury, Kent, was diagnosed with Complex Regional Pain Syndrome (CRPS) – which causes such constant severe pain it can lead sufferers to consider taking their own lives – after symptoms first appeared in September 2017
Millie (pictured in hospital), now 23, was diagnosed with ‘suicide disease’ aged 17 and is facing a race against time as her family try to fund treatment for her debilitatingly painful condition
CRPS is not a well understood condition according to the NHS, and it causes persistent severe and debilitating pain – which can cause burning sensations and swelling at even the slightest touch.
Millie was taken to the doctor who thought she had an infection because her toes were red and inflamed.
But the next morning Millie became paralysed in her four limbs and lost her senses of taste and touch.
She was in hospital for five weeks while doctors tried to figure out what was wrong with her. The teenager told medics she felt like she was being ‘burned alive’.
She gets severe looking bruises all over her body and knees which cause her immense pain.
Describing her daughter’s time in hospital, Mrs Martin said: ‘Those five weeks were horrendous I’ve never felt so lonely so afraid and so useless. My daughter was screaming in pain begging me to stop it and I couldn’t do anything to console her or make it better.’
Doctors eventually diagnosed her with CRPS, small fibre neuropathy – a nerve disorder – and an allergy which causes her skin to peel when it comes into contact with water.
‘In 2017 aged 17 she was living her best life, studying her last year of A-levels, having driving lessons and deciding on all the wonderful things that she wanted to accomplish in her life,’ Millie’s mother said
Millie’s condition can cause her face to swell and become inflamed and red
Millie’s bruises on her knees caused by her condition which cause her horrible pain
Millie can no longer walk due to her weak limbs and suffers from tremors, muscle spasms
Millie can no longer walk due to her weak limbs and suffers from tremors, muscle spasms. To get around she has to crawl on her hands and knees.
What is Complex regional pain syndrome (CRPS)?
Complex regional pain syndrome (CRPS) is a poorly understood condition where a person experiences persistent severe and debilitating pain.
Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.
The pain usually only affects 1 limb, but it can sometimes spread to other parts of the body.
The skin of the affected body part can become so sensitive that a slight touch, bump or even a change in temperature can cause intense pain.
Affected areas can also become swollen, stiff or undergo fluctuating changes in colour or temperature.
CRPS often gradually improves over time. But some people with CRPS experience pain for many years.
Source: NHS
She experiences severe pain at just a small touch or change in temperature.
Due to the severity of her condition, Millie’s ‘lonely existence’ is now confined to ‘four walls’ and she does not leave home unless being taken to appointments.
After going through all options for treatment in the UK, Millie’s family have launched a GoFundMe to get her treatment in Arkansas in the US.
The Spero Clinic is the only place in the world which offers treatment that can reduce pain levels to two or three from Millie’s current level of eight or nine, her mother said.
‘If we don’t do something, I know I’m not going to have my daughter next year,’ her Mrs Martin added, adding that it was the families ‘only hope’.
On the fundraising page, she wrote: ‘[Millie’s] story is heartbreaking and for the last five and a half years we’ve watched her endure the relentless pain and intense suffering of a cruel neurological condition.
‘In 2017 aged 17 she was living her best life, studying her last year of A-levels, having driving lessons and deciding on all the wonderful things that she wanted to accomplish in her life… But the only dream she has now is to not be in this debilitating pain.’
The family need to raise £112,845 for Millie’s treatment, but this is only the original fee and would not cover her ongoing care.
As of this week, they have raised around £80,000 of their £150,000 goal.
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