Alice's story

I never got the chance to meet my Grandpa Simon Broome whose name was used to  develop the diagnostic criteria for FH 

''It’s hard to write about someone you’ve never met. You have the image of them in your head, framed and frozen in time in old photos from decades ago. There might be the odd story that’s been told that gives a picture of the person who makes up part of your DNA.

Quite often as I was growing up I’d think of what my grandpa Simon Broome would’ve been like. Which traits did my mother inherit from him? Which traits might I have? What would he have thought of his grandchildren? I’d think about what life might’ve looked like with him around as we all grew up.

I knew he worked in the hotel business, he was the general manager of a hotel in West London. There were stories told of my naughty mother putting their very young little sister in a lift, and having her arrive in the hotel’s reception bemused, with my grandmother and grandpa wondering how she got there when she was far too small to reach the buttons…

I knew he was an avid golfer, with an impressive handicap of 4. He even befriended Bing Crosby who frequented the hotel where he worked, and they would play golf together on proper golf courses, and sometimes makeshift ones that they created using ashtrays throughout the building.

Simon Broome died in 1977 aged just 46. He had a sudden heart attack in his sleep. My grandma became a widow at 45 and their children were just 16, 14 and 11. Death is never easy or something we can be prepared for, but the shock of a sudden departure like that is unimaginable.

My grandmother had stopped working after she married, as was the usual way back then. She was suddenly a widow with no income, having to support a young family.

And the emotional toll of losing a family member so young must’ve been truly terrible. We’re gradually getting better at speaking up, but back in the 70's the “stiff upper lip” of British culture was even more prevalent. Often stunting the ability to reach out and simply ask for help.

I can only imagine how hard it must’ve been for the young Broome family trying to navigate their way through such a traumatic event during a time when emotions weren’t discussed.

In around 1973, my grandpa Simon had undergone some routine tests through his employer, something that not many at the time had access to. His cholesterol levels came back unusually high. He was told he needed to go and see his GP to follow up. They then recommended a trip to a special lipid clinic at the then John Radcliffe Infirmary in Oxford. He was found to have high triglycerides that were pushing up his cholesterol levels. With further questioning about his family history, they realised there was a genetic link and that he had familial hypercholesterolaemia (FH). 

On a recent visit to my grandma, Simon Broome’s late wife Katharine Broome, she recalled that time and told me that back in those days there wasn’t much you could do to lower cholesterol. Milk was full fat, there were no semi-skimmed or skimmed alternatives. Cream was in everything you cooked, it was the 70s after all. So it was much harder to radically change to a low-fat diet. Cholesterol-busting medications like statins didn’t arrive on the scene until the late 1980s.

So for grandpa Simon, there wasn’t much that could be done and despite knowing he had high cholesterol, the medicine wasn’t able to save his life and tragically he died of a heart attack just a few years later.

After his death, donations came in through the kindness of his friends, family and former colleagues. Through efforts made by his late wife Katharine and his former doctor, the Simon Broome Heart Research Trust was born of those donations. Over the years the trust developed into a patient information site, through the Family Heart Association, and a place where medical professionals could go to learn more about the connection between lipids and heart health. Years later and a few name changes, this trust was merged into HEART UK. 

In the early days of the Simon Broome Heart Research Trust, DNA testing was only really just being discovered. If someone was found to have high cholesterol, they would start to routinely test family members to see if there was a genetic link. As these connections were revealed, some geneticists noted how helpful it would be to have a central register to pick up more familial connections. Adding more names and more concerned family members meant more funding could be allocated to the growing research into familial hypercholesterolaemia. Years later this is still known as the Simon Broome register, something GPs across the country will be familiar with and is even listed on HEART UK’s website.

His impact on our family is hard to measure. His youngest daughter is a hugely successful hotelier in her own right, having been given her first job in hotels via a contact from her father. My cousin is a skilled golfer, maybe there’s something in the genes there?

And, there’s no denying we’re all very conscious of our cholesterol and heart health. Around the same time I got confirmation of running the marathon, my mother reminded me to go and get my cholesterol checked. It was a quick trip to the GP, a conversation about my family connections and a very straightforward blood test. My sister is currently going through that process too and my cousin also had his done a few years ago. We’ll all be monitoring our levels carefully throughout our lives, thanks to our knowledge of the link between cholesterol and heart health.

It’s something I’d encourage everyone to do as a routine check, but especially if there’s any family history of heart troubles. We’re lucky now to be living in a time where FH isn’t a death sentence, and early medical intervention can save lives.

Last year, sadly my paternal grandfather died after a heart attack. He was about to turn 83. In his final days and hours he was surrounded by family, his wife, children and grandchildren went to see him as he gradually passed away. He had an excellent life, a long one with a successful career and many great memories. And even though we’d hoped he’d be with us for longer, he got to know his grandchildren and see who they became. He had so much more time with us than my other grandpa had.

And, when writing this and reflecting on it all, I think that’s the main reason I'm running the marathon for HEART UK. I want to raise money for families to have more time together. Catching FH early and being on the Simon Broome register can prolong and save lives. Despite not being alive at the time of his death, I can still see the ripples of pain caused by his early and shocking death.

So I’ll have Simon Broome in my thoughts as I trudge on through those 26.2 miles. I’ll also be thinking about the families that in his death he’s helped keep together for longer. And I’ll have my own family with me, my grandma Katharine, uncle Andrew and aunt Victoria and my brilliant mother Emma, looking back and wishing they had all had just a bit more time together''.

To support Alice in the London Marathon 2025 donate here.

Read about The Simon Broome Criteria here