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‘Railman’s holiday’ to raise awareness of syndrome

Phil Godfrey with Muckle Flugga, a small rocky island
north of Unst in the Shetland Islands, in the background

Phil Godfrey is, by any standard, a determined man.

He told Novus Rotary Club that he was thwarted three times by bad weather and then injuries from walking from the Scilly Isles to the north of Scotland, speaking to Rotary Clubs along the way about the disease which killed his wife.

That disease is APS, short for Antiphospholipid syndrome (APS), an autoimmune disorder. Signs and symptoms vary, but may include blood clots, miscarriage, rash, chronic headaches, dementia , and seizures. APS occurs when a body’s immune system makes antibodies that attack phospholipids.

Phil said his wife had been a very active woman with whom he completed 15 long-distance walks before she became too ill. He explained that, in its early stages, APS often appears like Multiple Sclerosis. He believes his wife could have survived if she had been properly diagnosed ten years earlier.

Phil has raised £153,000 to educate general practitioners and other health professionals about APS but so far only 600 of the UK’s 52,000 GPs have been through the online course, approved by the Royal College of General Practitioners.

Phil told President Sarita Shah and seven other clubs members that he had spoken to a GP recently and she had said that APS is not rare, but it is not common. “The problem,” Phil said, “is that no-one knows how many cases there are in the UK; there is no database.”

He said that APS is preventable and treatable, if diagnosed sufficiently early. Thirty-seven per cent of GPs — 19,000 — don’t know about APS.

Phil’s first attempt to walk the 1,400 miles from the Scilly Isles to the Shetland Isles was to have started a couple of years after Christine’s death. The fog was so bad in Cornwall that all flights to the Scillies were cancelled for more than a week.

A torn muscle prevented a second attempt to walk from Land’s End to John O Groats. Then his GP ruled out his next attempt — and all long walks — because of a serious knee injury.

So Phil, who spent 40 years as a project manager on Britain’s railways, decided he would circumnavigate the British Isles by rail, speaking to Rotary Clubs as he went, to raise money and awareness of APS.

Novus, he said, was the 200th club he had spoken to. He said he had caught more than 650 trains (90% of which had been on time), eight ferries and three planes the smallest with 16 seats and the biggest with 35 seats. He had travelled 42,000 miles and his journey, fuelled by love and his desire to spread awareness, ended three days before COVID-19 Lockdown.

On Westray, off the Orkneys, he met by chance a woman who had APS and regularly saw the same professor who had treated Christine and with whom he works to stop APS being one of several ‘Cinderella’ syndromes.

If you would like to help them, you can learn more about APS here

The Facebook Page can be found here

Phil’s JustGiving page can be accessed here

A particularly curious twist in Phil’s fascinating illustrated talk is that several weeks before he reached Wemyss Bay Station in Inverclyde, Scotland — which he had never visited before — he dreamed about it and visualised exactly how a ramp in the architectural wonder led directly to the port.

The beautiful Wemyss Bay station in Inverclyde, Scotland

Last edited: 22:30 on Thursday, 27.08.2020