Phil Godfrey: Campaigning for APS

Tue, Jul 21st 2020 at 8:48 am - 9:48 am

As a result of his wife's death from APS (Antiphospholipid Syndrome) Phil was determined to raise awareness of its effects in order to improve testing and treatment for those who suffer from it. He relates his experiences.

Phil Godfrey: Campaigning for Antiphospholipid Syndrome

At a recent Zoom meeting, members of the Rotary Club of South Foreland heard from Solihul Rotarian Phil Godfrey who is an ambassador for the charity APS Support UK.  His wife suffered from APS and following her death in 2015 Phil determined to do all he could to raise awareness of the syndrome amongst both the medical profession and the general public with the aim of achieving earlier diagnosis and the best treatment for patients. It was thought to be a rare condition but that is not true as it occurs daily in pregnant women. Thirty seven percent of GPs know nothing about APS and other health professionals know little about it.

APS is an autoimmune disease which affects the consistency of the blood and increases the risk of excessive blood clotting that can result in heart attacks and strokes.  It occurs in people aged 20 to 50, mostly women. In pregnancy it can cause miscarriage and a greater risk of stillbirth.  It was first discovered in the West Indies in 1970 among pregnant women who suffered miscarriage, so is a relatively recent condition and is still under diagnosed and under recognised.  The tragedy is that it is both preventable and treatable; there is an APS test available on the NHS but there is a rule that it can only be given after a third miscarriage.

Phil gave examples of women who had suffered from APS but were undiagnosed, not tested or testing was delayed.  Clare had a stillborn boy and then three miscarriages before being tested and is now the proud mother of twins.  Beth had blood clots on both lungs and became increasingly unwell, but it was only a change of doctor who arranged for an APS test which meant that she had the correct treatment and recovered.  Phil’s wife Christine was an active person who loved tennis, badminton, walking and gardening.  In 1995 she developed a dropped foot and the fingers of her left hand became curled so that she could not straighten them.  She had tests and Multiple Sclerosis was diagnosed.  It was ten years later when a consultant referred her to Professor Hughes and a test confirmed that she had APS.  The original diagnosis was wrong but when the correct diagnosis was made it was too late and Christine lost the ability to walk and died in 2015.  While APS and MS have similar symptoms in the early stages, a correct diagnosis would have resulted in treatment and she might still be alive today.

After 18 months of planning a 14,000 mile walk from the Scilly Islands to the Shetlands, Phil set out on a wet, foggy day in March 2017.  At different times he experienced heatwave, heat exhaustion and injury. After pulling a muscle in North Cornwall he had to take time to recover before resuming his walk, which he continued to Preston but a problem with his right knee meant that he needed an operation. The consultant advised against continuing his walk but Phil was determined to try.  He managed another 400 miles but then had to give up and change plans.

He decided to travel all around the coast of Great Britain by train, stopping to talk to Rotary clubs on the way.  This lasted until just before Lockdown when he had travelled on 650 trains covering 42,000 miles.  Fortunately the travel was free.  He met a number of people with APS on his travels including a lady on a minibus trip on one of the Orkney Islands.  At Portsmouth he met a young man who, when he heard about APS, said that his wife had suffered 3 miscarriages: Phil advised that she should have the APS test.

Since Lockdown Phil has visited over 40 Rotary and Inner Wheel clubs by Zoom and plans to increase this to 103 before the end of the year making a total of 225.  South Foreland is the 170th club that Phil has talked to.  He has already raised £140,000 for an e-learning module on APS for GPs, through the Royal College of GPs; this module is now live and paid for.  The charity now plans to have an e-learning module for midwives.

While Phil will carry on with zoom meetings for Rotary clubs for now, another initiative he is pursuing is with the Women’s Institute.  He wrote to inform the organisation about APS and to ask their support for a campaign for APS testing after 2 miscarriages instead of 3.  The WI thought the delay in testing ‘barbaric’ and will give their backing, so widening the awareness of APS.

Club members were impressed by Phil’s commitment to his cause.  After the loss of his wife, his desire to improve the testing and life chances of those with APS is a great example of ‘service above self’.  His determination to achieve his goal despite numerous setbacks and the need to adapt to changing circumstances, shows what a remarkable person he is.

More About APS

It is an autoimmune disease which affects the blood and its ability to clot.  An overactive immune system is the root cause of the disease.  Normally the immune system protects the body against invaders such as viruses and bacteria by producing antibodies which destroy these harmful organisms.  Sometimes the body becomes confused and makes antbodies against itself, causing an immune disorder.  In the case of APS the body produces antiphospholiped antibodies; these attack phospholipids which contribute to blood clot formation and help maintain correct blood consistency.  Due to the phospholipids being attacked by antibodies the blood becomes 'sticky', resulting in a higher risk of developing blood clots.  

The clotting can affect veins, arteries and bodily organs and can cause heart attacks, strokes and deep veined thrombosis.  In pregnancy the antibodies can cause miscarriage, pre-eclampsia, small babies, early deiveries and stillbirth.

There are 2 main types of APS: Primary, when the condition is not linked to any other disease and develops in isolation, and Secondary when it develops alongside another autoimmune disorder, usually Lupus.  With Lupus the autoimmune system attacks its own organs such as kidneys and produces common symptoms such as fatigue, joint pain and skin rashes.  Other autoimmune conditions are Raynauds phenomenon, Sjogrens syndrome and Thryroid disease.  APS has also been linked with rheumatoid arthritis and celiac disease.

It is not known why the immune system becomes overactive but there is some evidence that there is a genetic predisposition that might trigger the condition.

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