This Saturday is the first anniversary of the death of my wife Lynn Faulds Wood. Her death sparked an astonishing response – glowing obituaries, 70,000 condolence tweets, and more than 400 letters and cards
This Saturday is the first anniversary of my wife Lynn Faulds Wood’s death.
Her death sparked an astonishing response: glowing obituaries, 70,000 condolences, and more than 400 letters and cards.
But what many of those nice people still don’t know is that, ironically, she died of a disease she was trying to warn other people about.
Not the colon cancer, which she was diagnosed with when our son Nick was only three years old and then campaigned on TV for years.
No, Lynn has had a stroke caused by an illness that few people have heard of. A disease called antiphospholipid syndrome (APS) that is difficult to remember.
APS, also known as Hughes syndrome or sticky blood, is an autoimmune disease that primarily affects women.
It triggers the immune system to produce abnormal antibodies. This, in turn, causes the platelets to clump together, causing clots, strokes and heart attacks.
The condition is involved in one in five deep vein thrombosis (DVTs), one in five strokes in people under the age of 45, and one in five recurrent miscarriages.
It was discovered nearly 40 years ago by a British expert, Professor Graham Hughes, and is treatable. However, many doctors still don’t seem to recognize the symptoms, as Lynn’s case unfortunately shows.
The result? Far too many people die unnecessarily. This has to change.
Lynn, who survived both skin and colon cancer, heard about APS after making a documentary series for ITV called The Ladykillers. One of the conditions she treated was lupus – another autoimmune disease affecting healthy tissue that caused her mother, Betty, to die.
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.
Lynn suffered a stroke caused by a disease that few people have heard of. A disease called antiphospholipid syndrome (APS), which is difficult to remember. APS, also known as Hughes syndrome or sticky blood, is an autoimmune disease that primarily affects women. The pair are pictured above together as broadcasters
Professor Hughes and Lynn became friends, and years later, long after his breakthrough in sticky blood, Lynn vowed to raise awareness of the problem.
She discussed the making of a documentary about APS and mentioned it as often as she could in media interviews. But it took her a while to realize she was also a victim.
In 2016 we were 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 on the BBC program Newsnight.
Shortly after the long flight home, Lynn developed chest pains. A local doctor at our practice diagnosed pneumonia.
A few days later, Lynn complained of pain in her leg. She told another locum she thought she had thrombosis – a blood clot.
The doctor measured her leg to check for swelling from thrombosis and said nothing to worry about. Two days later, Lynn still had pain in his legs. Her fear of thrombosis didn’t go away, but a doctor at a local hospital told her it wasn’t thrombosis or pneumonia – just muscle tension.
It wasn’t until May, six weeks after she first fell ill and limped by then, that Lynn saw our own GP, who immediately sent her for blood tests, an X-ray and a CT scan.
In 2016 we were 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 program Newsnight
This showed that my wife had been right all along. She had blood clots in her legs and lungs.
A professor of thrombosis and hematology at a leading London hospital later said to Lynn, “They could have killed you.”
In conversations with Professor Hughes, and after her own research, Lynn decided she had APS. At certain stages, she was prescribed heparin and warfarin, used to thin blood to prevent blood 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 families. We will also never know what impact the misdiagnosis has had on the final outcome.
What we do know is that over the next four years, Lynn showed many of the APS symptoms that people should watch for.
She sometimes lost her balance and was bothered twice. Balance problems and dizziness are common with APS and are caused by blood clots in the brain starving for oxygen and nutrients.
So it looks like, although we didn’t know it at the time, Lynn had blood clots in the brain, as well as in her lungs and legs.
Brainwave activity is also altered by APS. The antibodies are believed to cause small clots or a mild inflammatory response in the brain cells. This can cause memory and concentration problems, both of which affect Lynn.
“I just want my brain back,” she would say. She would wake up in the middle of the night with a headache – another APS symptom.
Her toes and fingertips turned cold – another symptom – and her toes turned red and purple and became painful. This was ischemia, where blood flow to the tissues is limited. In Lynn’s case, the clotting meant that the blood wasn’t reaching her limbs.
In January 2017, she was admitted to St Thomas’ Hospital in London, where she received 30 hours of iloprost for five days, a type of medical dynamite that was pumped into her body to open 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 high in vitamin K, such as avocado, broccoli, Brussels sprouts, and cabbage, as this could lessen 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 the consistency of her blood, often daily.
In December 2018, she was given hydroxychloroquine, which made her feel 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 could explain the headache.
Then, a few months before she died, Lynn felt a burning sensation under her chest, like acid reflux. An X-ray indicated a heart problem.
Thirty to 50 percent of people with APS have heart valve disease. Antibodies associated with APS are believed to form on the valves and cause scarring.
Despite all this, doctors said Lynn was coping well with her illness. At the last test before her death, her blood consistency was described by our GP as ‘perfect’.
So while her health wasn’t great, we had no reason to think she was going to lose her life – until the stroke that night a year ago.
The doctors told us it was caused by massive bleeding in the brain. Apparently warfarin can make the blood so thin, this could be the result – a drug meant to save her led to her death.
Another tragic irony: Two hours before they collapsed, Lynn and I had slammed the NHS outside our house.
After being taken to Charing Cross Hospital, she thanked the staff for their help, after which she lost consciousness. Eight hours later she died at her bedside along with me, our son Nick and his wife Lise.
We don’t want to criticize anyone who tried to help Lynn. We are sure that everyone has done their best. We wish we all, including many NHS employees, knew more about the terrible disease.
For more information about APS, please contact the Graham Hughes International Charity email@example.com or call: 020 3389 9333. You can make a donation at ghicworld.org
The twists and turns that hold scientific truths. This week: bitter enemy
Bitter, used to describe a depth of hatred, may contain an element of truth. In 2016, scientists found that enjoying flavors such as strong coffee and broccoli may in fact be associated with antisocial personality traits.
Researchers at the University of Innsbruck in Austria looked at self-reported data from about 950 Americans and found that bitter taste preferences were linked to characteristics ranging from aggression to psychopathy.
The researchers noted that ‘the results suggest how much people enjoy bitter-tasting foods and drinks. . . related to how dark their personality is, ‘possibly because emotions can be formed in response to the taste of food.
So if your enemies have these qualities, they can also have a bitter taste.