Complex Regional Pain Syndrome: Little boy Ben Johnson struggling with condition ‘suicide disease’
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A nine-year-old boy who sprained his ankle after roller-skating contracted a rare disease often called the “suicide disease” because the pain is so excruciating that it makes patients wish they were dead.
Ben Johnson, 9, from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after sustaining the injury and the pain continued to worsen.
It got to the point that Ben he couldn’t allow his foot to touch the ground, he couldn’t tolerate the water touching him and on a windy day it felt like ‘daggers digging into his lower leg’.
Ben has pleaded with both his parents and doctors to amputate his limb to ease his
suffering and told her mom and dad that she ‘wants to die’ because the pain is so extreme.
Ben Johnson, 9, has an extremely rare condition after spraining his ankle that is often called ‘suicidal illness’ because the pain is so excruciating that it makes patients wish they were dead.
Ben from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after sustaining the injury and the pain kept getting worse (Ben pictured now)
Ben’s father, Peter Johnson, described his son as an “energetic, self-assured and healthy kid who was passionate about sports, especially basketball” before he sprained his ankle and was sent for multiple tests and MRIs. 18 months ago.
“The doctors originally thought it was a tear and then ligament damage, but when it didn’t improve after 10 weeks, we investigated a bit more and finally diagnosed him with complex regional pain syndrome,” Peter told FEMAIL.
CRPS is a form of chronic pain that usually affects one arm or one leg. It usually develops after an injury, surgery, stroke, or heart attack, and the pain is out of proportion to the severity of the initial injury.
According to the McGill pain scale, it’s the most painful condition ever recorded, making it worse than childbirth, and it never stops.
Peter said it only affects “a few hundred Australians each year” and most are adults or teenagers.
“Even the slightest touch of something as light as hair or a raindrop causes severe pain,” Ben’s father Peter wrote on Ben’s account. GoFundMe Page.
Our boy has become a shadow of himself.
“This has already destroyed 15 percent of his life.”
Our boy has become a shadow of himself. This has already destroyed 15 per cent of his life,” said his father Peter (pictured with Ben).
“At night he tries to sleep with his leg hanging over the side of the bed, if he gets too relaxed he touches something and wakes up in agony,” said Peter (Ben pictured in hospital).
Peter said his son’s life has been devastatingly impacted by CRPS.
“At night he tries to sleep with his leg hanging over the side of the bed, if he gets too relaxed he touches something and wakes up in agony,” she said, adding that Ben only sleeps for about half an hour each night. .
“Her activities are extremely limited as any contact, water or wind is unbearable, her foot has not had a shoe or sock for over a year, and other than when she was given general anesthesia, she has not been able to wash herself.” that.’
Peter said that Ben’s right leg has “wasted away” and “changes color throughout the day.” “We can see his pain build up to a burning level as his leg turns a darker color and swells up,” he said (Ben’s legs pictured).
Peter said that Ben’s right leg has “wasted away” and “changes color throughout the day.”
“We can see his pain build up to a burning level as his leg turns a darker color and swells up,” he said.
Inside the house, Ben hops on his other leg, but outside, “he lives in a wheelchair and regularly closes his eyes and isolates himself from the world because he’s terrified of anything coming near or touching his leg.”
“At first he used to use crutches and one leg instead of a wheelchair, but now, because he’s so afraid of the agonizing pain turning into burning pain, it’s easier for him to be in the wheelchair.” , said.
He is also developing osteopenia in both the extremities and the spine.
“At first he used to use crutches and one leg instead of a wheelchair, but now, because he’s so afraid of the agonizing pain turning into burning pain, it’s easier for him to be in the wheelchair.” he said (Ben pictured in his wheelchair with his sister Esme)
The McGill pain scale measures the pain of CRPS patients as even worse than that of childbirth
Ben’s parents are now trying to raise money to send him to a rehab center attached to Boston Children’s Hospital (Ben pictured with his sister)
Ben’s parents are now trying to raise funds to send him to a rehab center attached to boston children’s hospital.
Described as “the best place that can now help you,” this will involve an eight-week stay in the US and incur significant medical expenses for the Johnson family.
Treatment at the center aims to provide psychological, physical and emotional support through full days of care.
Peter has created a GoFundMe for Ben with a goal of $175,000 and they have already raised $61,000.
“Ben is a fun, affectionate and sporty kid who is desperate to be ‘normal’ again, as he puts it,” said Peter.
“As a family, we long to see his cheeky smile and be scolded to go and play a few more hoops or play with his friends.”
He added: “Our entire family is desperate to allow our lovely son to regain hope, health and live a pain-free life.”
For more information or to donate to Ben and his family, click here.