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‘Suicide disease’ victim lives in permanent agony

A young British woman has been condemned to a life of endless pain after being afflicted with Complex Regional Pain Syndrome (CRPS) – commonly known as suicide disease – more than six years ago, a poorly understood condition where a person experiences persistent and debilitating agony and for which there is no known cure.

Natalie Martin said her daughter Amelia was a healthy 17-year-old in September 2017 when the first signs of CRPS appeared – a condition in which 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.

The Independent reports that Amelia first started to get pins and needles and odd episodes of her skin burning. One day she showed her mother two big bruises on her groin but thought she had accidentally bumped her legs.

The CRPS then hit with full force when Amelia experienced severe pain in her two big toes after school one day.

“She kept saying her toes were burning. She wouldn’t let me touch her. She said she felt as if she were going to die,” her mother said.

She was taken to the doctor who suggested an infection in her toes because they were both red and inflamed, but by the next morning, her body started to shut down and she lost the use of her limbs, her sense of taste and touch.

She was kept in hospital for five weeks as doctors scrambled to understand what was wrong with Amelia, who told them she felt as if she were being “burned alive”. The young woman was eventually diagnosed with CRPS as well as small fibre neuropathy – a nerve disorder marked by severe pain attacks – as well as an allergy which results in her skin peeling every time it is in contact with water.

She has muscle spasms, tremors, and weakness in her limbs, which has robbed her of the ability to walk. She can now only walk on her hands and knees. The slightest touch or a temperature change causes extreme pain.

Her mother said her daughter, who is now 23, “looks at four walls, and doesn’t leave the house unless we take her to appointments”.

The family has “exhausted” all options in the UK and set up a GoFundMe page to raise money for treatment in Arkansas, US. The initial sum needed for treatment is £112 845, which is only the minimum amount and does not cover ongoing care.

“The Spero Clinic is the only clinic in the world offering any treatment, but they do not claim to cure. They can bring down pain levels to two or three. Currently, Amelia has daily pain levels of eight or nine,” added her mother.

 

The Independent article – Young woman diagnosed with ‘suicide disease’ faces race against time: ‘I’m being burned alive’ (Open access)

 

See more from MedicalBrief archives:

 

New UK guidance: Acupuncture rather than drugs for chronic pain

 

Vicious cycle of pain and substance abuse

 

In tiny doses, an addiction medication eases chronic pain

 

 

 

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