Victoria Abbott-Fleming, 41, had both legs amputated above the knee after slipping and falling down some steps at work in 2003.
She had contracted complex regional pain syndrome (CPRS) - a severe and debilitating condition which is usually triggered by an injury.
In the worst cases it can cause atrophy in the affected limb as the skin, tissues, and bone waste away - leading to infection and in Victoria’s case amputation.
Years after having both legs amputated in 2006 and 2014 Victoria set up set up her own charity - Burning Nights CRPS Support - to help other CPRS sufferers.
She now advocates across the UK and worldwide for better understanding and treatment of CRPS.
In a personal letter to Victoria PM Boris Johnson wrote: "I know you do this with no thought of praise or reward but allow me to offer my own recognition of how through Burning Nights CRPS Support you are providing crucial support to patients affected by CRPS and their families and raising much needed awareness about the condition amongst health professionals."
Promising lawyer Victoria, of Chinley, had just passed the bar exam and was preparing to start training as a barrister when the accident happened in 2003.
She suffered a minor cut and bruising however within minutes of the fall her right leg had tripled in size - swelling so quickly it split the skin.
She was initially treated with anti-inflammatory drugs while suffering pain she described as being ‘covered in boiling oil’ and ‘stabbed in the legs’ during seven months of misdiagnosis.
After seeing 39 specialists Victoria was eventually diagnosed with complex regional pain syndrome.
In 2006 after her leg worsened to the extent that horrified Victoria, then aged 27, awoke one night to find it infested with maggots - medics decided to amputate.
However after contracting swine flu during a trip to New York in 2013 the condition spread to her left foot - leading to the amputation of her left leg.
Victoria, who still suffers constant excruciating pain all these years later and survives on 57 tablets a day, told how she hoped the PM’s Points of Light award would help her raise awareness of CPRS.
She said: “I’m really pleased - it’s such a rare condition that the more chance we get to highlight it the better it is.
“The earlier you get diagnosis and proper treatment the more chance you have of a better prognosis.
“The golden window is within three-six months - ideally within four weeks.
“There are patients who have been diagnosed early enough who have gone into remission.”
Victoria said her diagnosis at seven months was classed as ‘fairly early’ - with the average being two years.
She added: “We need to raise more awareness - 300 people a week are diagnosed with CPRS - but we also aim to provide support.
“A lot of people end up losing their jobs, relationships and homes.”
As part of this support Burning Nights has set up a support phone line however they need volunteers to help man the telephones between 10am-4pm, Monday to Friday.
The charity - which is completely self-funded - also has a number of fundraising events coming up.
Wrestling For Burning Nights CRPS Support - June 5 Three Peaks Challenge - August 15 Royal Parks Half Marathon - October 11 Fun Run Manchester at Heaton Park - August 23 Dog Jog 2020 Heaton Park - August 23 Ultra Challenge UK treks throughout the year
For more information email [email protected] or see the website at www.burningnightscrps.org.
To donate £3 per month to the charity text STRENGTH to 70300.