What is 'suicide disease'? 9-yr-old who rolled ankle is in so much pain he told parents he 'wants to die'
If you or someone you know is considering suicide, please contact the National Suicide Hotline at 1-800-273-TALK (8255).
MELBOURNE, AUSTRALIA: The family of a nine-year-old boy is seeking the public's help after he was left suffering due to a rare condition called "suicide disease" because the pain is so extreme it makes those affected by it contemplate killing themselves. Ben Johnson, who hails from Melbourne, developed Complex Regional Pain Syndrome (CRPS) after he rolled his ankle in a rollerblading accident, and the pain continued to worsen over time.
The pain became so excruciating that the youngster was unable to let his foot touch the ground or tolerate water touching it. His parents, who said a windy day felt like "daggers going into his lower leg," bemoaned how their son begged them and his doctors to amputate his limb to ease his suffering. He even told his parents he "wants to die" because the pain is so horrific.
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Johnson's father, Peter, described his son as a "confident, healthy energetic boy with a passion for sports, especially basketball" before he rolled his ankle and was sent for multiple tests and MRI scans 18 months ago. "Doctors originally thought it was a break, and then ligament damage, but when it didn't get better after 10 weeks, we did some more digging and he was eventually diagnosed with complex regional pain syndrome," he told the Daily Mail.
What is 'suicide disease'?
CRPS is described as a form of chronic pain that usually affects an arm or a leg. It is a rare condition that typically develops after an injury, surgery, stroke, or heart attack and the pain is majorly out of proportion to the severity of the initial injury. The disease is said to be the most painful condition ever recorded. As per the McGill Pain Scale, the pain is described as worse than childbirth and it never stops. The condition has been dubbed the "suicide disease" due to the number of people ending their lives due to the pain. According to Peter, the disease only affects a "few hundred Aussies every year" and most are adults or teenagers. "Even the slightest touch from something as light as hair or a raindrop causes severe pain," the embattled father wrote on his son's GoFundMe page. "Our boy has become a shadow of his former self. This has already destroyed 15 percent of his life," the page continued.
Peter said that his son's life has been destroyed by CRPS. "At night he tries to sleep with his leg hanging off the side of the bed, if he relaxes too much it touches something and he wakes up in agony," he said of Ben's plight, adding, "His activities are extremely limited as any touch, water or wind is unbearable, his foot has not had a shoe or sock on for over a year, and other than when he has been given a general anesthetic he hasn't been able to wash it." The heartbroken father said his son's right leg had "wasted away" and that it "changes color throughout the day," adding, "We can see his pain grow to a burning level as his leg becomes a darker color and swells."
Johnson hops around on his other leg at home, but when outside, he "lives in a wheelchair and regularly closes his eyes and shuts himself away from the world because he is terrified of anything getting close or touching his leg." Peter continued, "At first, he used to use the crutches and one leg instead of the wheelchair, but now because he is so scared of escalating the agonizing ache into a burning pain he finds it easier to be in the wheelchair." Furthermore, little Johnson is reportedly also developing osteopenia in both his limbs and spine.
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His anguished parents are now trying to raise funds to send him to a rehabilitation center attached to the Boston Children's Hospital, which they say is "the best place that can now help him." The treatment -- which aims to provide psychological, physical, and emotional support -- will reportedly involve an eight-week stay in the US and incur considerable medical expenses for the family.
As mentioned, Peter launched a GoFundMe campaign for his son with a $175,000 target goal and has raised over $68,000 at the time of publication. "Ben is a hilarious, caring, sporty little boy that's desperate to be in his words 'normal' again," the doting father wrote on the fundraising website. "As a family, we are longing to see his cheeky smile and be nagged to go and shoot just a few more hoops or to have him play with his friends. Our entire family is desperate to allow our adorable son to regain hope, health and live a pain-free life," he added.