Navy reunion surprises Kettering man by raising money for rare auto-immune disease

A reunion of submariners who served on HMS Torbay at the auction and raffle that raised 500 for Vasculitis UK
A reunion of submariners who served on HMS Torbay at the auction and raffle that raised 500 for Vasculitis UK

A Kettering man with a rare auto-immune disease said he was emotional when his former Royal Navy colleagues revealed they would be donating £500 to a charity that supports those with the condition.

Phil Eddy, 50, is a former submariner and was diagnosed with the rare auto-immune disease vasculitis two years ago. He met up with his former colleagues in the first weekend of September when they raised the money.

Phil Eddy was diagnosed with a rare autoimmune disease in January 2017

Phil Eddy was diagnosed with a rare autoimmune disease in January 2017

He said: "It was a reunion of ex and current submariners from HMS Torbay, which has just been decommissioned, including the initial commissioning crew from when it was built in Barrow-in-Furness.

"We met up in The Wheelers in Torpoint in Cornwall, just across the water from Plymouth. We had an evening there together and they had an auction and a raffle and then they always donate to a charity [that] they pick each year and this year they decided to donate to my charity which was a surprise."

The auction and raffle raised £500 and items on offer included an old Royal Navy clock, photographs and other memorabilia and, rather stereotypically of sailors, lots of rum and port.

The proceeds will be going to Vasculitis UK and Phil hopes the proceeds will be split evenly between the UK wide charity and a Northamptonshire support group.

HMS Torbay was a submarine in the Royal Navy and was decommissioned a few years ago

HMS Torbay was a submarine in the Royal Navy and was decommissioned a few years ago

Phil said: "It was quite emotional, actually, when the chaps [revealed they would be donating the money to Vasculitis UK]. I wasn't expecting it so it was really good and in previous years my wife, Tina and our children Dom and Charlotte raised £1500 by running up the Gibraltar rock."

Phil said his navy friends are thinking of doing their reunion in Gibraltar next year.

Mark Mytton, who helped to organise the event, said: "Phil and I served together on HMS Torbay and that was the first time I'd seen him in about 30 years. We knew he wasn't well but we didn't know that much about the charity.

"We were going to split [the money] and then one of the lads said 'what about Phil's charity' and we thought that is a brilliant idea, we all felt with Phil being a former crew member that is what we want to do."

The former submariner served in the navy for eight years from 1987 but has friends who are still in the force with a career of nearly 40 years in service. He said his friends had travelled from all over the UK to get together again and raise money for Vasculitis UK.

Vasculitis means an inflamation of the blood vessels and covers a number of different autoimmune diseases where the immune system attacks healthy blood vessels, but the cause is unknown. It is very rare, with around 10 to 15 new cases per million of the population each year according to Vasculitis UK.

Phil has been diagnosed with Wegener's granulomatosis, a type that mainly affects blood vessels in the nervous system, sinuses, ears, lungs and kidneys.

He said: "It's attacked my nervous system and I cannot feel my lower legs or my feet.

"I'd had a problem with my sinuses for a few years and I had been suffering for quite a few years. It wasn't until I had a pain that moved throughout my legs that I knew something was happening.

"I went to five different doctors and it wasn't until I collapsed at home in January that I was taken to hospital."

Phil had been having up to five nosebleeds a day and when he collapsed, he was suspected of having a heart attack.

"I was rushed into cardio. I spent 10 days in hospital having all sorts of scans and tests and on day 10 they diagnosed me with vasculitis.

"After that, they then had me on massive steroids and drugs and then I had to have six cycles of chemotherapy and now I have six month cycles of another infusion drug to keep my immune system suppressed. I take about 33 or 34 tablets a day to keep my immune system and the pain away because the pain is horrific and I still have limited feeling in my hands.

"It's taken a couple of years just to get back to a working person."

Maurice Crowson, who set up the Northamptonshire support group for those with vasculitis, said he was told by an expert that GPs might only ever see one case of the disease in their careers, so it can be hard to spot and diagnose.

If the Northamptonshire support group receives some of the money raised, Maurice said it would go towards the costs of meetings.

"We are a volunteer group and in fact the first two meetings have been financed by members, I financed the first one and my colleague who I started the group with, Mel Alexander, did the second one."

The two men started the group at the beginning of the year because there was no provision in Northamptonshire for those with vasculitis, but there were groups in all the surrounding areas and it can be hard for people with vasculitis to travel far because it can affect their mobility.

Maurice said: "The beauty of this group is we are able to help each other.

"There is a thirst for knowledge and understanding the disease because it's so rare. The experts are not always the consultants, its the people who have got it themselves."

He said one of their group is has qualifications in physical training and is hoping to teach the group some vasculitis-appropriate exercises.

Maurice was diagnosed with vasculitis in December 2017 and also experienced a long wait before he was doctors knew what was wrong. He hopes increased awareness of the condition will help others get diagnosed faster.

More about vasculitis and ways to donate can be found on Vasculitis UK's website.