Stories of Osteoporosis.
Letters we have received from people who had phoned the helpline.
Osteoporosis, multiple broken bones at 36!
Sinead Tobin’s story explains why it is so important that everyone check to see if they have risk factors for developing Osteoporosis
Dear Michele and the IOS
In 2013, I had my first baby. I had a normal, healthy pregnancy. I felt great and I was so proud of my new arrival. I imagined all the fun things we would do together like bringing her for walks, attending mother baby groups, baby yoga and so on. Things couldn’t get any better! Well, that was until things started to take a U turn.
I began to feel really unwell and suddenly all of the things I had envisaged us doing, became huge hurdles. I began to notice unusual symptoms as early as six weeks after having my baby. I was in constant pain, had severe fatigue and I felt my entire posture had changed. My clothes didn’t sit the way they had previously. The shoulders were all too large now, which I found odd.
I visited my GP several times who indicated these were all classic post pregnancy symptoms – fatigue, back and hip pain, ill-fitting clothes. I tried as much as I could to carry on normal day to day activities, like lifting the baby, making the bed, putting washing into the washing machine, carrying a light bag of groceries etc. I thought, do all new mothers feel like this? I knew that this couldn’t be normal.
It soon came to a head, when one afternoon, I simply sat on the couch while holding my baby and I felt a crushing sensation in my left hip, followed by a sharp persistent pain. Sometime later, I stooped to pick up a towel from the bathroom floor, when I felt further crunching, again followed by severe pain. Initially, I was embarrassed to admit such a pain was caused by these simple movements. I would have been more accepting had I been involved in an extreme sport accident or similar. Although I didn’t know it at the time, I had broken four bones in my back (fractured four vertebrae) and my left hip.
It was at this point that I had lost my independence. As hard as it was to admit, I was no longer in a position to mind my precious new baby myself. I could not be alone with her as I could no longer lift her and found basic movements painful. It broke my heart to see someone else pick her up when she needed attention, before she was passed to me. I went from being completely independent to being dependent on help 24-7.
Around this time, I changed GP and after one visit, I was diagnosed with Cushing’s disease, of which osteoporosis is secondary complication. In brief, Cushing’s disease is caused by a benign tumour in the pituitary gland at the base of the brain. It produces too much cortisol which affects most tissues in the body, including the bones. It prevents absorption of calcium which in turn, leads to osteoporosis.
I had the tumour removed in December 14 and while in remission, I contacted the osteoporosis society. At this point, I was looking for support, in terms of how I cope with this condition, believing it was a lifetime ailment. It was a scary and depressing thought at the prospect of never being able to lift or hold my daughter. Michele, CEO of the Irish Osteoporosis Society called within minutes of receiving my email. She explained the condition in detail and let me know that it is treatable and most importantly, reversible in certain cases. I would be in a position again to lift my baby! To hear this, was like hearing I had won the lotto J
Osteoporosis is a serious condition. It makes normal life extremely difficult and in my case, robbed me of my independence. The important thing to note however, is any restriction osteoporosis imposes can be temporary but only if you get help as soon as possible. Sadly I have heard since my diagnosis that most people (280,000) are not diagnosed and most will lose their independence. The DXA scan with the LVA (LVA is a DXA of the entire upper back) was instrumental in my diagnosis and it also helped explain why the fractures occurred so easily. Understanding the science behind it also helped me accept the condition. I am fortunate to be in a position where I was diagnosed and put on an immediate treatment plan. I look forward to a day, in the not too distant future, where I can pick up my little girl and carry on life as normal!
The woman below had become wheelchair bound due to so many broken bones in her spine when her son phoned us. She had been told nothing else could be done, prior to her son contacting us.
I wanted to thank your organisation for the help and guidance I received from you regarding my mum’s Osteoporosis.
The improvement has been substantial and together with the practical steps we took to adapt her house, her quality of life has improved substantially to the point that she is mobile and active again. We recently took her to Bath, UK to celebrate her 90th birthday and she will go on a Mediterranean cruise with my sister next month!
My Mum and I are extremely grateful for your guidance that has truly given her a new lease of life.
Well done and keep up the great work.
Dear Michele and the IOS
I would like to express my gratitude to the Irish Osteoporosis Society who advised on the care and treatment for my late father Jack Mc Auliffe in the final years of his life.
He had severe osteoporosis through years of steroid medication for the chest condition Bronchiectasis and this caused him to have numerous fractures and significant pain. It also caused him to lose height and as a result his chest complaint was compounded. He was unable to tolerate most medications for his osteoporosis except an over the counter brand that was not strong enough for his needs.
But through the patience and dedication of the Society who suggested working through his chest consultant in Letterkenny (he was not in a fit state to travel from Co Donegal) he got a suitable treatment that had a very significant impact on his wellbeing and quality of life.
He enjoyed a few pain free years with renewed energy and zest for life before his death at the age of 87 years from pneumonia. His Chest Consultant could not get over the improvement in her patient as he had been so poorly and underweight. He was much more mobile and had put on weight as his appetite had improved with the increased activity back to daily walks which were not possible before.
I would like to thank the Irish Osteoporosis Society for advising on the care of my mother Mary aged 92 years. It transpired that in the course of assessing her Osteoporosis and treatment for it she was discovered to be very deficient in Vitamin D.
As a result of correcting this she is like a new woman all the tiredness that she had and the cold that she was feeling in her hands and feet has disappeared she has renewed energy and is in great form. As the saying goes age is but a number and she is a perfect example of that.
However quality of life is important at any age and the work of the society ensures that people of all ages with this debilitating condition get the proper advice and care that they deserve.
Ann Mac Namara
I am writing to thank you and the Irish Osteoporosis Society for all the help and advice I have received from you. I feel I owe you a huge debt of gratitude for what the IOS has done for me.
As you know from our chats I had been struggling with back pain for quite a few years. I had been working in England and commuting home to Cork on the weekends.
About 6 years ago I began to get severe back pain and I went to see my doctor, who said it was just a strain, and gave me pain killers. A few months later I had to go back to my Doctor as I continued to have severe pain. I insisted on being sent to the hospital, where I had bloods taken, an MRI and X rays etc and was told there was nothing wrong with me. I honestly thought I was going crazy.
The pain would go away for a while and would then return, sitting, standing and walking would be very difficult at times but because I had been told there was nothing wrong, I tried to ignore the pain I was in.
Two years later I was outside doing some gardening and I hit my ankle lightly off a trailer, but it turned out I had fractured it and was in a cast for seven weeks. One year later, I broke the other ankle just putting on a pair of trousers. I just thought it was one of those daft things that happen when you get to fifty.
I was made redundant a year or so ago and came home to Cork full time. I started doing all the D.I.Y. that I never had time to do when I was working and shortly after initiating them I fractured my wrist.
At no point was the word Osteoporosis ever mentioned to me.
I saw my Doctor again as my back pain was worse and once again I was given painkillers. At this point I was getting very frustrated because I could not do the things I wanted to do, without weighing up first how much of a risk I was taking and if it would hurt afterwards.
I started snooping around the internet to see if I could find a good back brace and one of the sites that came up on Google was the Irish Osteoporosis Society. I emailed to ask if they could recommend a good back brace.
Michele from the IOS replied almost immediately with a phone number, I called and thank God I did because when I told her what I had been through she suggested that I should get a DXA scan, as 1 in 4 men over 50 have Osteoporosis.
I had a DXA scan taken of my spine and hip and found out that I had severe Osteoporosis in my spine including signs of fractures in my back. I had Osteoporosis in my right hip and Osteopenia in my left hip. The spinal damage had caused me to lose 3.5 inches in height, which if I had been diagnosed earlier, I more than likely would not have gone through all the pain I had to endure.
I was put on an Osteoporosis treatment specifically for severe Osteoporosis and spinal fractures and have been taking it without fail for the last 2 months. I already feel so much better and the pain is significantly less. It is early days but the IOS has given me lots of advice on diets exercise etc. and I feel hopeful for the future.
Michele told me that Osteoporosis is preventable and treatable in the majority of people, but unfortunately only 15% are diagnosed (even though 50% of women over 50 have it) and 70% of patients diagnosed stop taking their Osteoporosis medication within one year. I was shocked to hear this, as I could not imagine anyone leaving themselves open to multiple broken bones, loss of their independence and premature death.
Doctors do not appear to consider men at risk of Osteoporosis. I am writing this letter because I would not want anyone to go through the pain and suffering I have experienced especially when it is preventable and treatable. Previously to being diagnosed with Osteoporosis, I was sent for numerous tests which in total far exceeded the €100 that a DXA scan costs for Osteoporosis. If I had been sent for a DXA scan when I first complained of back pain, thousands of Euros would have been saved and I would not have had to endure all the pain and suffering.
The lesson to be learned by my experience is that if you are a male with back pain or if you have broken bones in the past, you need to contact the IOS right away, as the advice I received was superb. Taking pain killers does not solve the problem and in my case, if I had not contacted the IOS Charity, I more than likely would have ended up in a wheelchair in my 50’s!
The IOS (Irish Osteoporosis Society) is a Charity that depends on donations in order for them to maintain their services. If you have any queries and/or you are in a similar position as I was in, make sure you contact the society. If you are in a position to make a donation, please do so. I am a direct recipient of their services, I cannot stress enough how essential it is for people to support this Charity. They are the only organisation in Ireland that deals specifically with Osteoporosis.
I cannot thank them enough for all their help and advice.
So thanks again IOS/Michele keep up the great work.
Pete W (age 55 from Cork)
Maretta Dillon speaks with Niamh Foskin about a diagnosis of osteoporosis at age 33.
Niamh is a hypochondriac, at least that’s what her family thought!
Diagnosed in her mid-teens with Irritable Bowel Syndrome she suffered with very bad pains in her stomach which despite treatment including alternative therapies never really got better.
Niamh got on with life, completing her teacher training before returning to her home in South Kilkenny. In 2011, she had her first fracture from a really simple fall outside the school gate. Her mum, who is a nurse, advised her to see the GP who referred her on to A&E.
The fracture was treated but a couple of months later; she suffered a stress fracture from jogging. In February 2013, she fractured her left elbow after a simple fall, Niamh was beginning to wonder why, “every time I fall, there seems to be a fracture”.
After querying this with a doctor, she was sent on to a fracture liaison nurse who advised a DXA bone scan. In May 2013, the nurse told her the results – Niamh who is in her early thirties has osteoporosis.
She was then advised to have blood tests done and the results indicated there were a couple of issues. Her vitamin D levels were very low and there were coeliac antibodies present. Niamh was shocked – no one had ever mentioned coeliac disease as a potential problem.
People with coeliac disease – an inability to absorb the protein gluten - are more susceptible to osteoporosis.
Niamh researched the condition further and took steps to change her diet. She also saw a rheumatologist who presented her with some stark choices. Increase her vitamin D levels and calcium levels and because her osteoporosis was quite severe, take medication for this.
Niamh was somewhat reluctant to go down the medication route at such a young age but after speaking with the Irish Osteoporosis she decided to take the advice on board.
The Irish Osteoporosis Society also advised Niamh to look for a physiotherapist in her local area so she could build up her core strength and bone health, which will help to reduce her risk of breaking.
Asked about her thoughts on her medical journey, Niamh comments that, “the day they told me about the Coeliac antibodies in my blood, I really just felt that finally they know what’s wrong with me”. It’s hard to believe that having had symptoms of Coeliac for many years, no one ever mentioned Coeliac disease as a possible diagnosis.
Niamh has learnt to deal with her condition and, now with the change in her diet and lifestyle the pain and stomach cramps have gone.
With regard to the osteoporosis, Niamh realises she can improve her bone strength and. She will have to monitor her condition for the rest of her life but is more positive that she can manage everything into the future.
Due to the problem with absorption of nutrients into the body, bone loss can occur. If you or someone you know has had stomach issues, log onto the Coeliac Society of Ireland's website to see if you are one of the many undiagnosed Coeliac - www.coeliac.ie
Maretta Dillon speaks with Ravind Jeawon diagnosed with osteopenia at age 27.
Rav is male, Irish, 29 years old and has early stage of osteoporosis. He certainly does not fit the profile. Often dismissed as an ‘old woman’s disease’, osteoporosis literally means porous bones, and is not usually not diagnosed until multiple fractures (broken bone) have occurred and in most cases, even than it is not diagnosed.
As a child in Ireland Rav suffered a lot of minor fractures from low impact falls. In fact he was often unaware that he had been injured until the area affected swelled up. It wasn’t until his younger sister underwent a scan when she too fractured a bone that he was diagnosed with osteopenia, the precursor to osteoporosis at the age of 27.
Since then he has taken tablets to boost his calcium and Vitamin D3 intake, does 30 minutes of weight bearing exercise daily and regularly undergoes scans to monitor his condition. Given that Rav is taking the diagnosis seriously he should be able to significantly improve his bone strength and avoid fractures in the future.
Osteoporosis is also known as the silent killer and despite there being a family history of osteoporosis, the disease never came up in family discussions.
· 300,000 people in Ireland have osteoporosis.
· By 2031 it is estimated 500,000 will have the disease.
· One in four men and one in two women over 50 will develop a fracture due to osteoporosis in their lifetime.
· If you have one fragility (low trauma) fracture, this doubles your risk of another fracture due to osteoporosis.
· If you or someone you know have lost (more than 2cm), it is essential that you get a DXA scan to rule out Osteoporosis.
The good news is that osteoporosis can be prevented in most cases and is treatable in the majority of people, the earlier a person is diagnosed the better the results.
A DXA scan similar to an X-ray of your spine and hip area is the gold standard for diagnosing osteoporosis. The scan is highly recommended if you are at risk.
In Rav’s case genetics played the major role in why he developed osteopenia as it does for 60% of sufferers.
There are 200 causes of bone loss including:
· long term use of steroids
· eating disorders
· low calcium and Vitamin D3 intake
· testosterone deficiency in men
· smoking and excess alcohol
· Malabsorption of nutrients due to Coeliac or gluten intolerance
Osteoporosis can cause pain, disability and prolonged stays in hospital for broken bones and it will certainly mean a significant reduction in quality of life and independence particularly for older people. Hospital costs for treating falls and fractures in senior citizens are €402 million per annum in Ireland. It is estimated that costs will rise to €922-€1077 million by 2020. A DXA scan costs approximately €100.00.
Given that osteoporosis is so prevalent in Irish society and in many instances is treatable, it is a shame that it is not on the checklist for all age groups? One of the reasons may be the reluctance of people to speak about it. Rav is not just different because he shows the early stages of the disease but because he is actually willing to talk about how it affects him.
Michele O’Brien, CEO with the Irish Osteoporosis Society bemoans this reluctance to speak. “It is so difficult to get people to come forward. I met 9 people (recently) who have all reversed back to normal but not one would agree to be interviewed. They don’t want people knowing they have an old ladies disease. How many people come forward for breast cancer?”
Developing awareness among the medical profession is a key function of the society. Michele confirms that despite the prevalence of the disease “only 15% of people are actually diagnosed” and it is still possible for “people with ten fractures to be told it is just old age”.
What the society really needs, are people who are diagnosed with Osteoporosis to tell their story, to help raise awareness. By coming forward and getting rid of the stigma, they can help raise awareness for the 85% of people who are not diagnosed and will more than likely, lose their independence, when this condition is treatable.
It is hard to understand the reluctance by sufferers and others to speak about osteoporosis but unless this notion is abandoned then it is going to be very difficult for the Irish Osteoporosis Society and the disease itself to get the profile it deserves both within the medical profession and among the general public.
If you think you could help, then the Irish Osteoporosis Society would love to hear from you … your charity awaits!
Senior Times magazine are helping to support this cause with the inclusion of an extensive article on Osteoporosis on their website – seniortimes.ie. Read the article here.
- What is Osteopenia?
- Frequently Asked Questions
- Signs and symptoms of undiagnosed osteoporosis
- Risk Factors
- Risk Factor Questionnaire
- Diet & Osteoporosis
- Patient Stories
- Irish Osteoporosis Leaflets
- Glossary of Terms
- Hints and Tips for dealing with osteoporosis
- IOS Annual Medical Conference 2016 Presentations on VIMEO