A 29-year-old has described the agony of her rare skin disease which makes her feel like she is being burned alive.
Kayla Hansen, who lives in Peoria, Arizona, is covered in extremely painful burns and bruises, caused by a condition called Complex Regional Pain Syndrome.
The disease is said to cause the most pain a human can physically endure, and has been nicknamed the ‘suicide disease’ due to the number of people who take their lives after diagnosis.
The condition is believed to be caused by a disruption within the central nervous system, but each person who suffers from CRPS has a different reaction.
Experts say we do not know what causes CRPS, but it appears to be a ‘perfect storm’ of a triggering traumatic injury and genetic predisposition for chronic pain.
Kayla Hansen, who lives in Peoria, Arizona, is covered in extremely painful burns and bruises, caused by a condition called Complex Regional Pain Syndrome. She is pictured left in the hospital getting treatment and right on a day when she was feeling well
The condition causes extremely painful burns and bruises to erupt up her arms, on her hands, and even on her scalp
‘It is an autoimmune disease that effects every single part of your body including organs,’ Kayla wrote online.
‘Your body can no longer control temperature, and it literally feels like you are being burned alive 24/7.’
Another symptom, she explained, is that her brain constantly sends a message to every part of her body to tell them that she is in pain.
‘If affects your bones, muscles, every nerve in your body, body tissue and all organs,’ she wrote.
Treatment usually consists of medications, temperature therapy, physical therapy and bio feedback.
Kayla, who shared these photos of her outbreaks to Facebook, said ‘your body can no longer control temperature, and it literally feels like you are being burned alive 24/7’
Additionally, infusions of the powerful sedative ketamine and spinal cord simulators can provide some relief from the nearly constant agony.
‘It feels like somebody has dipped you in gasoline, lit you on fire and put you in a trash compactor,’ Kayla explained to AZFamily.com.
‘It’s known as the “suicide disease.” They (sufferers) take their own life because they feel so alone and they’re in so much pain.’
Kayla said she first experienced symptoms in 2015 when she was working as a restaurant manager and a door accidentally slammed on her hand.
LIVING IN PAIN: WHAT IS CRPS?
Complex Regional Pain Syndrome usually develops after an injury, often a minor injury.
The pain is often unconnected to the seriousness of the injury and can be out of all proportion from what the sufferer would expect.
The condition is little-understood, but some medical experts think it is caused by damage to the nervous system, which causes nerves to misfire in some way, triggering pain.
If left untreated the pain can spread to other parts of the body too.
Some sufferers have repeated episodes of pain followed by stretches of pain-free remission.
It can be treated by physiotherapy, to prevent muscle wasting, certain types of painkillers and counselling to help people cope with the chronic pain.
She thought it was broken, but when two months later the swelling hadn’t gone down and the pain started to spread up her arm, she knew it must be something much worse.
The pain, she said, felt like an electric shock at the site of the first injury, and then the bruises started spreading the length of both of her arms and onto her scalp.
After the bruises spread they erupted into large and painful blisters.
So far she has seen more than 50 doctors, and each one has said she has the worst case they have ever seen.
‘These people feel at least one or more body parts are on fire, her doctor Katina van der Merwe explained.
‘Literally burning alive.
‘They’ll lose weight, can’t sleep at night, headaches often. She will literally feel the heat come up and it will blister and develop sores.’
There is some hope if the condition is caught early enough. Patients whose disease is caught within a year of developing it can go into remission, though she explained that it’s rare.
The condition, according to Dr van der Merwe, affects millions but is often undiagnosed. Instead people just remain confused about the source of their agonizing pain.
Kayla said she first experienced symptoms in 2015 when she was working as a restaurant manager and a door accidentally slammed on her hand. Eventually the swelling turned into bruises that spread up her arms and eventually turned into painful blisters
Hansen has said she won’t stop looking for a cure and fighting to spread the word about the condition, and that she just wants her life back
She also explained that often doctors don’t know about it or think to check for it, which can cause a huge delay in diagnosis and ultimately treatment.
‘If you don’t know about the condition you’re going to waste so much valuable time going from doctor to doctor,’ she explained.
Each time she has a new outbreak of sores she has to go to the hospital to avoid infection – which could result in the loss of limbs if it is not treated immediately.
The doctor said the condition causes the highest level of pain a human can endure.
And Hansen has said she won’t stop looking for a cure and fighting to spread the word about the condition.
She has been in Arkansas since April 8 with a disease specialist.
‘If I have to go to different states, different countries, I’m going to keep going,’ she said.
‘I want my life back.’
She has shared her story on GoFundMe to raise money for the expensive treatment and to spread the word about her disease.