Arlesey teenager battling pain like 'having your limbs in boiling water' raising funds for treatment

Appeal launched for treatment in USA after NHS runs out of options to treat Complex Regional Pain Syndrome

By Olga Norford
Friday, 25th March 2022, 5:55 pm

A teenager living with chronic pain is raising funds for specialist treatment in America after the NHS told him there was nothing more they could do to help him.

Jack Puttock, of Arlesey, suffers from Complex Regional Pain Syndrome, which he describes as like 'having your limbs in boiling water' and is trying to raise £50,000 to pay for treatment not available in the UK.

Jack, 19, was diagnosed with CRPS in August 2019, a rare condition affecting around 1 in 3,000 people in the UK, associated with the imbalance and malfunction of the autonomic nervous system.

Jack is determined to beat the illness and get his life back on track

The painful symptoms are managed with medication however Jack says the NHS has run out of treatment options but he is determined to beat the illness.

Said Jack: "The medication I'm on helps manage the pain but last January it seemed they had thrown everything at it and ran out of options. But I want to get to a stage where I can not only reduce the pain but return my body to normal function and put the condition into remission.

"I've carried out a lot of extensive research to find out as much as I can about the disease and to find my own pathway. as there just wasn't the support there within the NHS.

"It's really frustrating but I found out about this treatment being offered in Arkansas and eventually launched the appeal in August last year. It then took a bit of a back seat as I started University in September. But the appeal has now raised £8,000 and I'm really hopeful of achieving the target as I've organised a placement for the treatment in May 2023."

Jack, was diagnosed with CRPS in August 2019, a rare condition affecting around 1 in 3,000 people in the UK

Complex Regional Pain Syndrome (CRPS) can be triggered by a minor injury such as a sprain or broken bones or can appear spontaneously without a known cause.

Jack, a student at Anglia Ruskin University, says the condition appeared out of the blue when an egg-like lump appeared on his wrist.

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He added: "It was extremely painful but the doctors didn't know what it was or what to do. They thought initially it was a fracture and put my wrist in plaster. Then they decided I'd torn cartilage which wasn't the case. Basically, they had no idea until the condition was diagnosed months later.

"I went from looking forward to a future to not knowing what was wrong. My world just crashed down around me. It was such a shock as I was really active, regularly doing 50-mile cycle rides but having to give it all up."

However, Jack has not allowed the disability to hold him back and during the pandemic started his own business.

Jack explained: "After doing A levels I applied for retail jobs but was rejected so I started a company with a friend designing and developing websites. I also did some freelance work. But my aim is to do a Masters Degree with the end goal career aim of working in the finance sector.

"I also intend to set a support network to help others in the same situation. I was 16 when this happened to me and I felt very alone. There was no support and I was left to Google things and do my own research and find a clinic in America which can hopefully help.

"At times I've even had to educate doctors about CRPS so I want to work with the NHS and other organisations to make sure there is a support network to help other people suffering with rare diseases."

To donate to Jack's appeal visit his GoFundMe page here