The ‘cure’ killed that Lynn
John Stapleton’s wife Lynn was on blood thinners for a rare condition. What a tragic irony, he says, that they cost the TV presenter her life . . .
THis saturday will be the first anniversary of the death of my wife Lynn Faulds Wood. Her passing prompted an amazing response — glowing obituaries, 70,000 tweets of condolence, and more than 400 letters and cards.
But what many of those kind people still don’t know is that, ironically, she died of a disease she was trying to warn other people about. not the bowel cancer, which she was diagnosed with when our son nick was just three years old and afterwards spent years campaigning about on TV.
no, Lynn suffered a stroke caused by a disease of which few people have heard. A disease with the hard-to-remember name of antiphospholipid syndrome (APs).
APs, otherwise known as Hughes syndrome or sticky blood, is an autoimmune disease predominantly affecting women.
it triggers the immune system to produce abnormal antibodies. This in turn makes the blood platelets clump together, causing clots, strokes and heart attacks.
The condition is implicated in one in five deep vein thromboses (DVTs), one in five strokes suffered by the under-45s, and one in five recurrent miscarriages.
it was discovered by a British expert, Professor graham Hughes, almost 40 years ago and is treatable. However, many doctors still don’t seem to recognise the symptoms, as Lynn’s case sadly demonstrates. The result? Far too many people are needlessly dying. This must change.
Lynn, who survived skin cancer as well as bowel cancer, learned of APs after making a documentary series for iTV called The Ladykillers. Among the conditions she featured was lupus — another autoimmune disease affecting healthy tissue and from which her mother, Betty, had died.
Professor Hughes is a world expert on lupus and during years of treating patients suffering from it, he discovered the syndrome now known as APs.
PROFESSOR Hughes and Lynn became friends and years later, long after his sticky blood breakthrough, Lynn pledged to raise awareness of the problem.
she discussed making a documentary about APs and mentioned it as often as she could in media interviews. But it was some time later before she realised she was a victim, too.
in 2016, we had been on a wonderful holiday in Argentina — a sentimental journey for me, as 34 years earlier i had spent two months there covering the Falklands War for the BBC’s newsnight programme.
shortly after the long flight home, Lynn developed chest pains. A locum GP at our surgery diagnosed pneumonia.
A few days later, Lynn complained about a pain in her leg. she told another locum she thought she had thrombosis — a blood clot.
The doctor measured her leg to check for thrombosis swelling and said there was nothing to worry about. Two days later, Lynn still had leg pain. Her fears of thrombosis did not go away but a doctor at a local hospital told her it wasn’t thrombosis or pneumonia — just muscle strain.
it wasn’t until May, six weeks after first becoming ill, and by which time she was limping badly, that Lynn saw our own GP, who immediately sent her for blood tests, an X-ray and a CT scan.
These revealed my wife had been right all along. she had blood clots in her legs and lung.
A professor of thrombosis and haematology at a leading London hospital later told Lynn: ‘ They could have killed you.’
in conversations with Professor Hughes, and after research of her own, Lynn decided she had APs. At certain stages, she was prescribed heparin and warfarin, used to thin blood to avoid clots.
We will never know if APs was inherited from her mother — one in five lupus sufferers also has sticky blood and it can run in the family. We will never know either what impact, if any, the misdiagnosis had on the eventual outcome.
What we do know is that for the next four years Lynn displayed many of the APs symptoms that people should look out for.
she sometimes lost her balance and had two nasty falls. Balance problems and dizziness are common with APs and are caused by blood clots to the brain starving it of oxygen and nutrients.
so it seems that although we didn’t know it then, Lynn had blood clots on the brain as well as in her lung and legs.
Brainwave activity is also altered by APs. it is thought the antibodies cause tiny clots or a mild inflammatory reaction in the brain cells. This can cause memory and concentration problems, both of which Lynn suffered from.
‘i just want my brain back,’ she would say. she would wake in the middle of the night with a headache — another APs symptom.
Her toes and fingertips became cold — yet another symptom — and her toes turned red and purple and became painful. This was ischaemia, where blood flow to the tissues is restricted. in Lynn’s case, the clotting meant blood was not reaching her extremities.
in January 2017, she was admitted to st Thomas’ Hospital in London, where over five days she was given 30 hours of iloprost, a sort of medical dynamite that was pumped into her body to open up her arteries and save her toes.
it had limited success, but Lynn was never able to wear fashionable shoes again.
she was also advised to avoid anything with a lot of vitamin K, such as avocado, broccoli, sprouts and cabbage, as it could diminish the effect of the warfarin. The drug works by interfering with how the liver uses vitamin K — too much vitamin K can cause blood clots.
Lynn also had to check, often daily, her blood’s consistency.
in December 2018 she was put on hydroxychloroquine, which made her depressed and tearful — highly unusual for someone who was optimistic and cheerful.
An Mri scan later confirmed damage to her brain. APs may have affected some nerve endings, and would explain the headaches.
Then, a few months before she died, Lynn felt a burning feeling under her chest, like acid reflux. An X- ray pointed to a heart problem. Thirty to 50 per cent of people with APs suffer heart valve disease. it is thought that antibodies associated with APs form on the valves and cause scarring.
Despite all this, doctors said Lynn was managing her illness well. At the last test before her death, her blood consistency was described by our GP as ‘perfect’.
SO ALTHOUGH her health was not great, we had no reason to think she would lose her life — until the stroke that night a year ago. The doctors told us it had been caused by a massive bleed on the brain. Apparently, warfarin can make the blood so thin, this can be the result — a drug meant to save her led to her death.
yet another tragic irony: two hours before collapsing, Lynn and i had been clapping the NHS outside our home. After being taken to Charing Cross Hospital, she thanked staff for helping her, then lost consciousness. eight hours later she died with me, our son nick and his wife Lise at her bedside.
We do not want to criticise anyone who tried to help Lynn. We feel sure everyone did their best. We just wish we all, many NHS staff included, knew more about the dreadful disease. ■ TO FIND out more about aPS contact the Graham Hughes International Charity hello@ ghicworld.org or phone: 020 3389 9333. you can make a donation at ghicworld.org