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Raising awareness of little-known disease in tribute to his wife

Posted onPosted on 5th Feb
Raising awareness of little-known disease in tribute to his wife

A grieving husband’s mission to raise awareness about a little-known killer disease will see him spread the word at Mansfield Rotary Club.

Phil Godfrey, of Solihull, is travelling the country on a ‘Round Britain Rail Tour’ and has so far raised £139,000 towards the fight against Antiphospholipid Syndrome (APS).

He will speak to Mansfield Rotary members at their meeting on Tuesday, 11th February, explaining how APS claimed the life of his wife, Christine, after misdiagnosis.

Christine began suffering symptoms similar to Multiple Sclerosis, but that proved to be a misdiagnosis.

Phil said: “It took 10 years for her to be sent to a specialist at St Thomas Hospital London who properly diagnosed APS.

“By this time though she had lost use of all her limbs until she was paralysed from the neck down.

“For an active, still young and independent woman to be crippled in this way was unimaginable.

“Appallingly, had she had an early diagnosis this could have been prevented. Eventually Christine succumbed to the disease and lost her life.”

In his grief, Phil decided he wanted to do something to stop others suffering by spreading awareness.

He first aimed to walk from the Isles of Scilly to the Shetland Islands to raise much-needed funds for the charity, APS Support UK, to inform doctors how to recognise the symptoms of APS — and to offer support to anyone affected by APS through awareness, education and research.

But having completed around 400 miles, he suffered a severe knee problem that required an operation and scuppered his plans for the charity walk.

That’s when his challenge became the Round Britain Rail Tour. with the same objective of raising awareness of both the charity and the symptoms of APS.

Phil is using a UK-wide network that includes talks to Rotary and Inner Wheel clubs, churches and other organisations.

He added: “I am trying to raise the profile and awareness of the disease by raising funds to make GPs more aware of the condition through training.

“A recent patient survey indicated that 37% of GPs are not even aware of APS.

“Early diagnosis is critical to the successful treatment of APS and as GPs are on the front-line of primary care, the process of educating them is crucial.”

Some of the money Phil has raised funded a first-ever Royal College of GPs’ elearning training course to help doctors have a greater understanding of the syndrome.

Other money is going to a APS research fund.

To make a donation go to https://www.justgiving.com/fundraising/phil-godfrey-tour

ANTIPHOSPHOLIPID SYNDROME (APS) FACT SHEET

•APS Support UK is dedicated to raising awareness and funding research into antiphospholipid syndrome (APS). Its prime objective is to educate both the medical profession and the general public about this seriously under-diagnosed condition. Our mission is to save and improve lives of people with APS by achieving earlier diagnosis and improved treatment through education, information, support, and research.
aps-support.org.uk

•Antiphospholipid syndrome (APS) is an incurable, life-threatening autoimmune disease in which there is an increased tendency for the blood to clot too quickly both in veins and arteries. It can affect any organ of the body giving rise to potentially fatal events such as heart attacks, strokes and DVT. Early diagnosis and appropriate treatment can often prevent these serious complications developing and reoccurring.

•APS can be detected with three relatively simple blood tests: aCL (anticardiolipin), LA (lupus anticoagulant) and a newer test: anti-beta2-glycoprotein1. The blood tests are inexpensive and are available at most laboratories throughout the UK.

•Once diagnosed, the main treatment is usually anticoagulant drugs such as aspirin, heparin, rivaroxaban and warfarin.

•The disorder affects all age groups from infancy to old age, but the majority of patients are diagnosed when they are aged between 15 and 50. It is more common in women than in men – for every two men with APS, there are seven women affected, but this this may be because of its more well known effect on pregnancy.

•APS is responsible for 1 in 6 of all strokes, heart attacks and DVTs in people under 50, and is recognised as the most significant treatable cause of recurrent miscarriage.

•In pregnancy APS can cause early or late miscarriage and women are five times more likely to suffer a stillbirth if they have the condition. It is the most important treatable cause of recurrent miscarriage, and the recognition and treatment of APS improves the chances of preventing miscarriage from below 20% to 70%-80%. At present women are not tested for APS until after three consecutive miscarriages.

•A study published in Clinical Rheumatology 2009 found that the average time for a patient with APS to be diagnosed is three years – it is often many more.

•APS Support UK have launched a GP Training module to help educate GPs about this under-recognised condition.

•APS Support UK now have an APS Research Fund and award grants every year to scientists and researchers.