The missing millions that are making the nation shrink – Royal Osteoporosis Society announces plans to find a cure for crippling disease

Wednesday 13 February 2019 

Millions1 of people in the UK today could have broken bones in their spine which are not being recognised, according to the Royal Osteoporosis Society. People incorrectly think getting shorter is just a natural part of growing old or ‘just one of those things’, says the charity, which today announces ground-breaking plans to find a cure for this often crippling disease which affects more than half2 the population.

The Royal Osteoporosis Society, formerly the National Osteoporosis Society, recently received a rare royal title from Her Majesty The Queen in September 2018 and officially changes its name today [13 February 2019] at a ceremony attended by the charity’s President Her Royal Highness The Duchess of Cornwall whose own mother and grandmother suffered with the disease.

Her Royal Highness The Duchess of Cornwall said: “I have seen for myself the pain and the ignominy that the sufferers of osteoporosis endure, as both my mother and my grandmother died as a result of this devastating disease. My fervent hope for the future is that my children, and my grandchildren, understand the importance of looking after their bones throughout their lifetime to prevent osteoporosis. Finding a cure, through research, is vital and has to be the Royal Osteoporosis Society’s ultimate goal to stop future generations experiencing the agony of their forebears.”

Royal Osteoporosis Society chief executive, Claire Severgnini, says: “If one of your parents lost height as they got older, then it could be a sign of osteoporosis3, which means you’ve got a greater chance of getting it as well. And that back pain4 you’ve complained about could actually be as a result of broken bones, especially if you’re over 50.

“The nation is simply shrinking, and it is no longer acceptable to think of it as just one of those things that happens as you get older, that’s why today we’ve announced we want to find a cure for osteoporosis and encourage everybody to start to look after their bones, no matter how old they are. Bone health is just as important as looking after your heart or mind but far too many people don’t think about bone health.

“Imagine losing five inches in height due to the bones in your spine breaking. Now think how that will affect your breathing and eating. It’s surprising but most people actually know somebody with osteoporosis without even realising it. We want to give hope to those living with the condition as well as stopping future generations from getting this disease.”

The Royal Osteoporosis Society also launched today the world’s first Osteoporosis and Bone Research Academy which brings together the best minds, leading researchers, clinicians and academics in the field to advance our scientific knowledge of this disease and drive the research for the development of new medications and treatments.

Osteoporosis causes bones to lose their strength and break more easily. It is estimated half of all women and one in five men are affected, old and young; impacting mobility and causing unbearable agony. Osteoporosis doesn’t have any outward symptoms and the first sign is often a broken bone usually in the wrist or hip and most commonly in the spine sometimes known as a vertebral fracture. Osteoporosis itself doesn’t cause pain, the pain felt comes from the broken bones.

Sheila Knight, 79, from Gravesend, Kent, has broken four bones in her spine and lost five inches in height: “I was in so much pain, it was agony really. I feel as if my spine is crumbling. It alters my life completely. Because of the disease my bones have squashed down. I don’t like to make a fuss and I carry on as much as I can. My husband has been too frightened to hug me in case he breaks another bone … so that’s very sad. If we find a cure for osteoporosis, then my granddaughters won’t have to suffer as I’ve suffered.”

Judith Jewiss, 56, Sheila’s daughter, also from Gravesend says: “My Mum’s just got so tiny. Her height loss is so visible and it’s quite hard for me to look at my Mum and think how much pain she’s in. It’s like she’s crumbling before my eyes. Mum’s a very proud women and she’s very independent but it’s quite sad that people feel they have to hide the pain they’re in.

“It’s a very frightening disease to live with. It was just coughing that crumbled her spine. Because Mum’s got it, there’s more risk of me getting it. And I’ve got three daughters, so they’ve also got more chance of getting it. I don’t want my girls to suffer the way Mum’s suffered, their Gran. There’s no cure for osteoporosis and that’s what we want – a cure.”

Emeritus Professor of Bone Medicine at the University of Cambridge School of Clinical Medicine Juliet Compston, Chair of the new Osteoporosis and Bone Research Academy says: “The Academy will change the lives of millions and advance our understanding of the causes of osteoporosis, explore and develop new innovative technologies as well as understand the effectiveness of new diagnostic tools, treatments and interventions. Next year the Royal Osteoporosis Society will be the first bone charity in the world to build an osteoporosis research roadmap charting the route to a cure and giving hope to future generations.

“That could mean using genomics and other new sciences to improve our knowledge of the causes of osteoporosis and how to prevent it, or regenerative medicine, prevention medicine, big data and engineering.  And, importantly, fostering strong collaborations between the osteoporosis and bone health community to strengthen the drug development pipeline.”

There are some things you can do to reduce your chances of getting osteoporosis by improving your bone health such as maintaining a good body weight, not smoking or drinking too much alcohol and taking regular impact activity but there are many risk factors you can’t change such as your genes, your age and gender or ethnic background. This is why it is important that up to the age of 30 you build your bone bank and start thinking about bone health, according to the Royal Osteoporosis Society.

Many people do live well with osteoporosis, leading active lives, but if anybody has concerns about osteoporosis or queries about bone health they can visit theros.org.uk, email nurses@theros.org.uk, or contact the Royal Osteoporosis Society specialist nurse Helpline on 080 800 0035.

 

Note to Editors:

Contact the Royal Osteoporosis Society press office on 07525 593390 or media@theros.org.uk.

  • Images of HRH The Duchess of Cornwall, President of the Royal Osteoporosis Society, are available via the Press Association
  • Images of Royal Osteoporosis Society chief executive Claire Severgnini, Sheila Knight and Judith Jewiss and Professor Juliet Compston are available from the ROS press office
  • Images inside healthy bones and those affected by osteoporosis, plus 3D scans of a spine taken five months apart showing how the vertebrae have collapsed due to osteoporosis
  • Interviews with Royal Osteoporosis Society chief executive Claire Severgnini can be arranged
  • Footage of Sheila Knight and her daughter Judith Jewiss is available via social media – @RoyalOsteoSoc @RoyalOsteoPro #RoyalOsteoporosisSociety
  • Footage showing the deterioration of bone density (impact of osteoporosis) over time is available
  • More information about the Royal Osteoporosis Society is available online at theros.org.uk

[Please note the National Osteoporosis Society officially becomes the Royal Osteoporosis Society at 12:30 on Wednesday 13 February which is when the website and social handles will be live. Until then information about the National Osteoporosis Society is available at nos.org.uk]

The Royal Osteoporosis Society (ROS) is the only UK charity dedicated to improving the prevention, diagnosis and treatment of osteoporosis. It is committed to keeping the nation’s bones stronger for longer. It speaks up for those affected, because so often osteoporosis is not recognised, not listened to and people are denied the support they need to live a life free from pain. Osteoporosis is not ‘just one of those things’. Through the development of new treatments and therapies the charity is determined to find a cure.

The Duchess of Cornwall has been President of the charity since 2001 and became involved with the organisation in 1997 following the deaths of her mother in 1994 and previously her grandmother as a result of the illness.

1 More than three million people, aged over 50, are estimated to have a spinal fracture in the UK (broken bones in the spine) of which up to 2.2 million are undiagnosed.  See regional breakdown figures below.

2 It is estimated half of all women and one in five men over the age of 50 are affected, but osteoporosis can also affect much younger people as well as well as those with anorexia nervosa, athletes or be associated with pregnancy for example.

3 Height loss. A spinal fracture (broken bones in the spine) take between six to 12 weeks to heal.  During the healing process, spinal bones or vertebrae don't return to their normal shape. They heal in their new compressed shape. This can lead to height loss and curvature of the spine.

4 Back pain. Ongoing pain after a spinal fracture has healed is caused by the change of shape to the spine. This change in shape can cause different types of pain for example nerve pain or muscle spasms.

Regional figures

The estimated number of people by region, aged over 50, with spinal fractures (in brackets) and the approximate two thirds that are undiagnosed.

Example:

Nearly 108,000 people in Wales could have broken bones in their spine which are not being recognised, according to the Royal Osteoporosis Society.

England:

London and South East – (nearly 446,000) – nearly 295,000 undiagnosed

North England – (nearly 437,000) – more than 288,000 undiagnosed

South Central – (more than 346,000) – nearly 230,000 undiagnosed

North East and North West Midlands – (just under 510,000) – more than 336,000 undiagnosed

South West and Channel Islands – (around 302,000) – nearly 200,000 undiagnosed

Eastern England – (nearly 294,000) – nearly 194,000 undiagnosed

Central England – (nearly 278,000) – more than 183,000 undiagnosed

Northern Ireland – (more than 82,000) – more than 54,000 undiagnosed

Scotland – (more than 270,000) - more than 178,000 undiagnosed

Wales – (more than 163,000) - nearly 108,000 undiagnosed

Features

Additional information available for features:

  • History of osteoporosis and bone health from Egyptian mummies and grave robbers to Coronation Street, Strictly Come Dancing and Star Wars
  • Case studies
  • More facts about osteoporosis and bone health