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After first showing symptoms of the excruciatingly painful condition, which is professionally known as Complex regional pain syndrome (CRPS), back in November 2021, Dillon was left in persistent pain as medics desperately tried to find the correct diagnosis. But with little knowledge about the condition available, Dillon was only diagnosed by a local hospital in Bolton back in January of this year. Finally with a diagnosis, his mother Melanie Wilford is campaigning to raise £100,000 to take Dillon to America in order to receive specialised treatment that is currently unavailable in the UK.
The NHS explains that CRPS is where a “person experiences persistent severe and debilitating pain”. Typically triggered by an injury, the pain that follows is often longer-lasting and can spread to other parts of the body.In fact, the condition is so sensitive even the slightest touch to the affected area causes severe pain.
However, in Dillon’s case, there was no trigger. Instead, as Melanie recalls, one fateful morning he awoke with a limp.
“There was no trigger for it.
“It was completely random, he woke up one morning and he was limping. That night he screamed all night horrifically. The next day I took him to A&E and they said there was nothing wrong with him,” Melanie recalled.
Despite finding a doctor who was aware of the condition, there is no available cure for CRPS, meaning that Dillon and his family remain in “absolute hell”.
In a 2021 review, Samantha-Su Taylor et al, explained that the condition is divided into type one and type two, the first of which occurs when there is no confirmed nerve injury. She also concluded that those already diagnosed with conditions such as fibromyalgia and rheumatoid arthritis may be at a higher risk of developing CRPS.
Speaking about the severity of the pain Dillon is in, Melanie added that even so much as a singular strawberry seed or singular cat hair makes her young son scream out in pain.
She said: “He screams every night. The first sound I hear when I wake up is my son screaming. He screams all the time. He has to wear shorts. One day he was eating a strawberry one tiny seed fell off and hit his leg and he screamed. If he gets a cat hair on his leg, he screams. If I touch him with.
“It’s 12cm above his knee all the way down to his feet, his right leg.
“This is hell, absolute hell. It’s like a life sentence for a child. He’s begged me to have his leg removed. He told me he wanted to die. It’s horrific to watch my cheeky boy end up like this.
“People need to know how bad it is. For a little boy who has this, he hasn’t been to school in three months.”
Along with chronic pain, individuals with CRPS can also suffer from a variety of symptoms including:
- Strange sensations in the affected limb – it may feel as if it does not belong to the rest of your body, or it may feel bigger or smaller than the opposite unaffected limb
- Alternating changes to your skin – sometimes your skin in the affected limb may be hot, red and dry, whereas other times it may be cold, blue and sweaty
- Hair and nail changes – your hair and nails in the affected limb may grow unusually slowly or quickly and your nails may become brittle or grooved
- Joint stiffness and swelling in the affected limb (oedema)
- Tremors and muscle spasms (dystonia)
- Difficulty moving the affected body part
Currently, the NHS offer various treatments to help manage symptoms including physical rehabilitation, pain relief and psychological support, but the condition remains extremely complex, and in many cases remains misdiagnosed.
It for this reason that Melanie is seeking support to take Dillon to America in order to help get him walking again. “It was four weeks between physio appointments and that isn’t on,” she explained.“We’re raising 100k for him to send him to a clinic in Arkansas.
“It includes light therapy, oxygen treatment, they do things that they don’t in this country. It’s a 16-week treatment and it’s every single day.“They do over 120-blood tests – they haven’t even tested his blood test over here. In the UK they don’t do anything like that.
“There’s no known cure for CRPS but they can get people into remission. Once you’ve got CRPS you’ve got it for life.
“Once you go to America, they get you walking again. The people I’ve been speaking to in other countries don’t seem to get it back after they’ve had the treatment in the US.”
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