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The story behind the story

By Elizabeth Adlam

It was a comment from Cancer Research UK that gave me the idea: “Why don’t you do something on one of our ‘neglected’ cancers – pancreatic cancer?”

We hear so much about the ‘top’ cancers such as breast cancer: money is poured into research, new drugs, new genes discovered, new treatments, there’s been huge improvement in survival - all of which is wonderful. True. But what about this unsung cancer? I quickly found it not so uncommon - 11th for happening , but 5th for dying – lowest survival, least known about, picked up late – too late, no screen , mini spend. Why?

 I was hooked.

 And there must be many other conditions out there that get overlooked for whatever reason.

 I discussed this with Editor-in-Chief Gill Hudson, and we agreed that I should need to write about three such conditions to make the point.

 So began my detective work – always the fun of writing for Reader’s Digest. Apart from cancer, what other vital health area has some dusty, forgotten corners? Of course… heart disease. The British Heart Foundation came up trumps. ‘Familial hypercholesterolaemia fits the bill?’ they said.

FH means inherited high cholesterol, and therefore high risk of premature heart disease. It’s a no-symptom killer, but is as common as Type 1 diabetes – yet guidelines from NICE re effective identification and treatment are mostly ignored. Up-front money is not being spent. A very different scenario from pancreatic cancer, but the end result is the same… FH is definitely overlooked.

 Hooked again.

 Then there’s that hugest 21st Century challenge: dementia ; Alzheimer’s disease is its most common form. We hear about this all the time, but hope it will never happen to us. Before long a million of us will be afflicted. But for all the talk, it is sorely neglected. The exact cause remains unknown; there’s no cure and no screen. Old age is when Alzheimer’s pounces, and our society is ageing relentlessly. Yet dementia remains ‘drastically underfunded’.

 So that’s it.

 I decided on a similar pattern for each condition: What is it? Who’s at risk? Why neglected? What’s the latest treatment? What’s in the pipeline?

 Decision made, I embarked on identifying the best sources for the definitive, accurate facts; the leading experts for ‘horse’s-mouth’ expertise; helpful patients for strong anecdotal material. I love the interviewing involved – the helpfulness and dedication of the experts and their willingness to give up their time, and my total immersion in the subjects.

 Upbeat. After turning a spotlight on these ‘neglected’ conditions, I end each on a note of optimism and promise.

 Late extra. I often pick up a bit of ‘useless’ knowledge during my researches. This story was no exception. Mona Lisa (or rather, Leonardo’s model) probably had FH!… Take a look at the telltale cholesterol signs - little lumps in the corner of an eye, a lump on her hand.

Here's an extract from the article.

Attention, Please!

Some illnesses receive a lot of attention—and money. But many of those not in the spotlight affect huge numbers of people. So why, asks Elizabeth Adlam, are they so neglected?

There are some diseases that just seem to get pushed to the bottom of the heap—the kind you might not even notice until you know someone who’s been affected.
Sometimes, it’s because the illness isn’t that common and just doesn’t register on the radar. Sometimes, it’s because you think of it pretty much as a death sentence, so push it to the back
of your mind. Or sometimes it’s because you hear about it a lot, but see it as a threat to later years—and hope it won’t happen to you when you get there.
But many of these “Cinderella” conditions deserve more attention, especially when greater awareness can have a significant effect on treating them successfully.


Pancreatic cancer
Cancer of the pancreas—the gland that produces the hormone insulin as well as enzymes that help to digest food—is notoriously hard to diagnose, as 45-year-old Ali Stunt from Haslemere, Surrey, can testify. Four years ago, this healthy, trim, non-smoker developed severe and recurrent upper abdominal and back pain, which doctors put down to irritable bowel syndrome or dyspepsia. But after Ali ended up in A&E, a scan revealed a tumour in her pancreas. Yet just a month earlier, Ali had no symptoms.

Who’s at risk? Pancreatic cancer is indiscriminate, but smoking increases risk (20 per cent of cases are caused by it), as can a family history of the disease. The majority of those diagnosed are over 60, and it’s uncommon below 40 (Apple founder Steve Jobs (below) was 49 when he announced he was suffering from it). Symptoms can be vague—unexplained weight loss, jaundice or abdominal pain, for example.

Pancreatic Cancer in the UK

3%
The five-year
survival rate

8,000
Number of new
cases each year

5th
most common
cause of
cancer death

80%
Percentage of
cases that occur
in people aged
60 and over

Familial hypercholesterolaemia (FH)

FH is an inherited condition involving high levels of cholesterol in the blood from birth and, consequently, high risk of premature heart disease. “It affects one in 500—about as common as Type 1 diabetes,” says Steve Humphries, British Heart Foundation professor of cardiovascular genetics at University College London. “But FH doesn’t produce symptoms until your arteries are so furred up that you have a heart attack.”
This is exactly what happened to Martin Keighley of Tarporley, Cheshire, when he was only 33. “One minute I was jogging down the high street,” he says. “The next I woke up in a hospital bed. Later, someone told me they saw me stop, sit on a wall, then keel over.”

Who’s at risk? Siblings and children of someone with FH have a 50 per cent risk of developing the disease. Symptoms include high cholesterol in the blood. Outward signs are a ring of white cholesterol deposits around the iris (in old age only), white patches under the eye and lumpy deposits on the Achilles tendon or knuckles.

FH in the UK

1 in 500
Proportion of
people affected
by FH

120,000
Estimated number
of FH sufferers

20,000
Number of people actually diagnosed with FH

50%
Percentage of men with FH who will
have a heart attack
by 60. It drops to
30% for women

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