Addenbrooke’s patient with ultra rare condition builds YouTube following and aims to raise £10,000 for Cambridge hospital with new song

An Addenbrooke’s patient with a condition so rare that there are only 140 recorded cases across the globe has thanked the medical team who intervened the day before he was due to have chemotherapy for what was initially believed to be cancer.

Ben Standing has now developed a significant YouTube following after writing music about his CLIPPERS disease - and he hopes to raise £10,000 for the Cambridge hospital’s neurology department by releasing a song called Powered by Love, which you can hear below.

Ben was diagnosed with the condition at the end of 2024 after months of investigative scans and a brain biopsy.

There is currently no diagnostic test or cure for the disease, which affects a person’s balance and co-ordination and can affect the ability to speak or swallow. It is treated with steroids.

CLIPPERS and brain lymphomas react to the same treatment, meaning one can be mistaken for the other.

Ben was about to begin chemotherapy for what was suspected to be a brain lymphoma when a team of specialists at Addenbrooke’s halted treatment and called for further investigation.

Another scan gave a very different picture to one several months earlier, with changes in the pons area of the brain that are more in keeping with CLIPPERS.

Ben was shocked to have his chemotherapy called off the day before, but is very grateful.

“I was due to have the lines fitted in my arms on the Friday. On the Thursday night, the day before my treatment was due to start, the team at Addenbrooke’s flagged the fact they could see infection but described the biopsy results as inconclusive so pulled the treatment and called for more tests. I was fed up at the time but in hindsight it stopped me having unnecessary chemotherapy,” he said.

Ben is under the care of specialists at the Neuro Immunology Clinic at Addenbrooke’s, including Dr Ed Needham, a consultant neurologist who is one of only 10 or 11 CLIPPERS specialists in the UK.

“One of the tricky things with CLIPPERS is that it happens in a part of your brain that is really, really important, and so doing a brain biopsy, which is the gold standard test that we would often go to for difficult diagnoses, would lead to significant disability. As a result, we are reticent to do that so we very much rely on scans,” explained Dr Needham.

“Sometimes the findings are very typical and you can diagnose it easily from the scan, but other times it can be far trickier.

“Ben’s case was a very unusual presentation of an already very unusual, rare condition. Although you wouldn’t have looked at his first scan and thought it was CLIPPERS, his scans changed over time, raising this as a possible diagnosis, and fortunately he was able to have a biopsy early on as the area affected was not in the area of the brain usually affected by CLIPPERS.”

He added: “CLIPPERS is really difficult in its similarity to lymphoma. The scans can look identical, as can the response to steroids. We also think that there are some patients that have CLIPPERS who go on to develop lymphoma, but of course the counter argument to that is that perhaps the CLIPPERS was a misdiagnosis and it was actually lymphoma from the start.

“Fortunately, if a patient with CLIPPERS was mistakenly given chemotherapy it would not be a catastrophe, as lymphoma treatment would likely be a highly effective treatment for CLIPPERS, but potentially a bit too strong. It would help your symptoms and your disability, but it could put you at higher risk of complications like infections.”

The process used to diagnose Ben’s case was an example of a “perfect team effort”, he said, explaining: “There were a lot of people involved in getting to the bottom of Ben’s case, and the communication between these professionals was very good. Genuinely with things like this, a system should not rely on a single person to diagnose an unusual condition, but it is the importance of the team approach that shows it is working.”

Ben first noticed something wrong while he was on holiday in May 2023 and began veering across pavements when walking.

“I was bumping into whoever I was walking next to. Within two weeks, I would be falling off the kerb into the side of the road. I would redirect myself back onto the pavement and it would happen again. It would be like I had had 10 pints of beer but I have never had 10 pints of beer in one go in my life, ever!” he said.

Back in the UK, Ben, from Ipswich, was referred to hospital for a brain scan which consultants believed to be a brain lymphoma - a type of brain cancer. Ben was told that without treatment, it would be “life-threatening.”

He was referred to Addenbrooke’s where he underwent a brain biopsy and was put on steroids.

“Within half an hour, I was walking 99 per cent normally again,” he said.

But when the dosage was reduced, his symptoms worsened. His speech has also slowed and Ben begins to stutter at the end of the day as his medication wears off.

Unable to work since his diagnosis, Ben began writing computer-generated songs about his condition. Describing his style as “upbeat and cheesy”, he has had 1.5 million views on YouTube and racked up 54,000 subscribers, with his local radio station, Radio Big Sky, helping to boost interest.

He hopes his new song, Powered by Love, will raise £10,000 to help towards funding a future diagnostic test or research into a cure for the disease.

“Addenbrooke’s have been amazing from day one, ringing me twice a day after I had been in hospital to check if I was OK. I dread to think how much money has been spent on my care and operations, so if I can do this and possibly help find a cure for CLIPPERS or an early diagnosis, it would be amazing,” he said.

The money will go to Addenbrooke’s Charitable Trust (ACT), which helped Dr Needham to become a CLIPPERS specialist by funding a clinical research fellowship in advance of his PhD.

Calling for more funding into research, he said: “I wouldn’t have been able to get my PhD and have my research career if I hadn’t had the ACT funding. It is about investing in the person to be able to then go on and do research in the long term.”

Ben’s website, which includes a link to his Just Giving Page and his new song, can be found at benstanding.com.