John and Ian’s Story
Having known each other for 30 years, living opposite each other in Harpenden for 20 of them, John Tett and Ian Darnell recently discovered that they’d both been diagnosed with Wild-Type ATTR cardiac amyloidosis. Just how much of a coincidence is this?
John and Ian’s Story
July 15, 2026 · by Seth Mowshowitz
John Tett and Ian Darnell have known each other for over thirty years. They lived opposite each other in the town of Harpenden, Hertfordshire for twenty of those years. John, now aged 76, was recently diagnosed with Wild-type ATTR cardiac amyloidosis. Earlier this year, John and Ian were catching up and came to a sudden, startling realisation: they’d both been diagnosed with Wild-type ATTR cardiac amyloidosis.
Ian retired from his role as a fitness instructor at the age of 50 when he was diagnosed with rheumatoid arthritis. Around 15 years later he was also diagnosed with atrial fibrillation and, most recently, amyloidosis. Now 81 years old, Ian manages numerous amyloidosis symptoms on a daily basis on top of the arthritis and atrial fibrillation including back problems, carpal tunnel syndrome, swollen ankles and fatigue — arguably the most frustrating for him.
Ian’s amyloidosis is being treated with tafamadis and this has proven quite successful so far. He’s on the waiting list for knee replacement surgery and, sadly, has had to give up all forms of alcohol including red wine, his favourite.
Living with amyloidosis: Ian’s story
Ian retired from his role as a fitness instructor at the age of 50 when he was diagnosed with rheumatoid arthritis. Around 15 years later he was also diagnosed with atrial fibrillation and, most recently, amyloidosis. Now 81 years old, Ian manages numerous amyloidosis symptoms on a daily basis on top of the arthritis and atrial fibrillation including back problems, carpal tunnel syndrome, swollen ankles and fatigue — arguably the most frustrating for him.
Ian’s amyloidosis is being treated with tafamadis and this has proven quite successful so far. He’s on the waiting list for knee replacement surgery and, sadly, has had to give up all forms of alcohol including red wine, his favourite.
John's journey to diagnosis
John was also diagnosed with atrial fibrillation a number of years ago. Sadly, this led to him having to stop donating platelets and plasma. He’d been a donor for 48 years up until then. For around three years John had sleep apnoea before losing four stone in weight. He also focussed on exercising more and eating healthier foods.
In mid-December 2025, John was admitted to New Cross Hospital, Wolverhampton and spent three nights there as an inpatient. When he was given his drugs and paperwork, they were treating him for a minor heart attack. Just prior to leaving, a doctor suggested that he should have an MRI scan. This was done in January and he was subsequently referred to the Queen Elizabeth Hospital, Birmingham.
By early April, after many scans and blood tests, it was finally confirmed that John had amyloidosis. He promptly agreed for his name to be put forward for a clinical trial. He also decided that he was going to set himself a challenge of walking 400 kilometres in 90 days to help raise awareness and funds for Amyloidosis UK’s charitable work. Part of the reason John’s been able to meet this gruelling challenge so far is because of the wonderful efficiency of these two NHS Hospitals. He can’t understate how grateful he is to them for being diagnosed in the early stages of his condition. As of May, John is being treated with acoramidis.
By early April, after many scans and blood tests, it was finally confirmed that John had amyloidosis. He promptly agreed for his name to be put forward for a clinical trial. He also decided that he was going to set himself a challenge of walking 400 kilometres in 90 days to help raise awareness and funds for Amyloidosis UK’s charitable work. Part of the reason John’s been able to meet this gruelling challenge so far is because of the wonderful efficiency of these two NHS Hospitals. He can’t understate how grateful he is to them for being diagnosed in the early stages of his condition. As of May, John is being treated with acoramidis.
It turned out that Ian had already been living with his amyloidosis diagnosis for four years by the time John received his own. Prior to being diagnosed, neither John nor Ian knew anybody else in their social circles who had been diagnosed with the condition. Remarkably, Ian managed to find two more people in his area following his diagnosis thanks to a local newspaper and they formed a small support group. All three in the group suffer from very similar symptoms including back problems, carpal tunnel syndrome, arthritis and atrial fibrillation. The group has been a real lifeline for Ian.
The known UK amyloidosis community is both very small and spread out across the country. However, given that amyloidosis is significantly under-diagnosed in general, it is difficult to know with any certainty just how many people are living with the condition in the UK today.
From available data, the average chances of knowing somebody with an amyloidosis diagnosis are difficult to pin down precisely, but almost certainly higher than most people would expect and very likely an underestimate of true prevalence given how significantly the condition is underdiagnosed. ATTR amyloidosis with cardiac symptoms in particular is now thought to be far more common than previously recognised. A UK electronic health records study found the incidence of newly coded cardiac amyloidosis diagnoses nearly tripled between 2004 and 2021 (rising from 0.75 to 1.96 per 100,000 person-years) and many cases still go undetected.
If we look at wild-type ATTR (ATTRwt) specifically, the most reliable UK data comes from the National Amyloidosis Centre (NAC) at the Royal Free Hospital, the only NHS-funded specialist centre for amyloidosis in the UK, and therefore the closest thing we have to a national picture. Between 2010 and 2022, around 1,600 patients over the age of 70 were diagnosed with ATTRwt-CM at the NAC, with diagnosis rates rising steeply across each five-year period (Porcari et al., European Journal of Heart Failure, 2023; Ioannou et al., Circulation, 2022). Accounting for a living diagnosed population, current estimates suggest somewhere in the region of 1 in 13,000 to 1 in 22,000 people in the UK carry a diagnosis, though this is an estimate derived from NAC data rather than a published prevalence figure, and almost certainly remains a significant undercount.
The known UK amyloidosis community is both very small and spread out across the country. However, given that amyloidosis is significantly under-diagnosed in general, it is difficult to know with any certainty just how many people are living with the condition in the UK today.
Understanding the numbers
From available data, the average chances of knowing somebody with an amyloidosis diagnosis are difficult to pin down precisely, but almost certainly higher than most people would expect and very likely an underestimate of true prevalence given how significantly the condition is underdiagnosed. ATTR amyloidosis with cardiac symptoms in particular is now thought to be far more common than previously recognised. A UK electronic health records study found the incidence of newly coded cardiac amyloidosis diagnoses nearly tripled between 2004 and 2021 (rising from 0.75 to 1.96 per 100,000 person-years) and many cases still go undetected.
At first glance, John and Ian's story does seem like a staggering coincidence. Upon closer reflection, it raises some interesting questions.
If we look at wild-type ATTR (ATTRwt) specifically, the most reliable UK data comes from the National Amyloidosis Centre (NAC) at the Royal Free Hospital, the only NHS-funded specialist centre for amyloidosis in the UK, and therefore the closest thing we have to a national picture. Between 2010 and 2022, around 1,600 patients over the age of 70 were diagnosed with ATTRwt-CM at the NAC, with diagnosis rates rising steeply across each five-year period (Porcari et al., European Journal of Heart Failure, 2023; Ioannou et al., Circulation, 2022). Accounting for a living diagnosed population, current estimates suggest somewhere in the region of 1 in 13,000 to 1 in 22,000 people in the UK carry a diagnosis, though this is an estimate derived from NAC data rather than a published prevalence figure, and almost certainly remains a significant undercount.
International data underlines just how much is being missed. A 2024 Italian population-based screening study found ATTRwt-CM in 0.46% of people aged 65–90 (Aimo et al., European Journal of Preventive Cardiology, 2024) and autopsy studies have found TTR amyloid deposits in the hearts of up to 25% of people over 80, though only a proportion develop clinically significant disease (Tanskanen et al., Annals of Medicine, 2008). The condition is strongly age-related and seems to predominantly affect men (male patients make up between 73% and 96.5% of ATTRwt-CM cohorts across published studies) meaning true prevalence in older populations is likely far higher than diagnosed prevalence in the general population suggests.
For two people to both have an ATTRwt-CM diagnosis and know each other, the odds in the general population are vanishingly small: somewhere in the region of 1 in 400 to 1 in 1,000 or more. But that figure shifts considerably once you account for age. ATTRwt-CM is almost exclusively a condition of people over 70, so within that demographic the diagnosed pool is far more concentrated. Two older patients navigating the same cardiology services or support networks are operating in a much smaller world. Within that world, the coincidence becomes meaningfully less improbable than the raw numbers suggest.
Why so many people are still waiting for answers
What John and Ian’s story tells us about amyloidosis in the UK is that the landscape is definitely shifting for the better. More people are being diagnosed than ever before and the chances of being misdiagnosed or remaining undiagnosed are steadily reducing. What seemed like a staggering coincidence at first turned out to be a confirmation that things are moving in the right direction towards better outcomes for those either living with amyloidosis now or who will be living with the condition in future.
However, John and Ian’s story also demonstrates that much more still needs to be done. The gap between true prevalence and diagnosed prevalence of amyloidosis in general remains high and the majority of both healthcare professionals and the wider population remain unaware of the condition. Both John and Ian have found that the vast majority of healthcare professionals they’ve each had to deal with outside of their amyloidosis care teams have never heard of the condition.
One step at a time
John was fortunate to be diagnosed in the very early stages of amyloidosis, thanks to two brilliant hospitals and NHS staff. Many who are diagnosed are not as fortunate. Amyloidosis is still too often either caught late or mistaken for other illnesses. Despite initially feeling very low, John wanted to make the most of being diagnosed early while he still could. He took it upon himself to make a difference and set himself the aforementioned walking challenge to help raise awareness of amyloidosis in the hope that others might get a diagnosis sooner as well. He has his whole family behind him, helping every step of the way. Each day they get more involved across three generations, organising their own events to help raise awareness.
The original target was 400 kilometres but by the end of May John had already reached 226 km so his decided to raise the bar to 500 km and in the past few days he’s raised it again to a staggering 600 km. The family also upped their fundraising target from £2,000 to £2,500 and have already exceeded that target at the time of writing. John needed to average 39 km every single week and has always met or in most cases exceeded the target. For a man of 76 managing the daily toll and sleepless nights of amyloidosis, this is a monumental task and the extreme heatwaves of 2026 have made it even more so.
With gratitude and with hope
All of us at Amyloidosis UK wish to extend a huge, heartfelt thank you to John and his family. What they’re doing is an inspiration to the entire amyloidosis community. It shows us both how important it is to increase early diagnoses for as many people as possible going forward and, most of all, that there is life and hope beyond a diagnosis. We’d also like to thank Ian for taking the time to tell us his story. We wish both John and Ian all the best. We hope you’ll find inspiration in their story and share it with others. If you’d like to support John’s amyloidosis fundraiser, you’ll find the link below.
Team Tett: Outwalking Amyloidosis
John Tett is walking 600km in 90 days to help raise awareness of amyloidosis with help and support from three generations of his family. Donations go towards our charitable work.
Please share and support John’s JustGiving page (and keep checking it for updates).