Today marks World Osteoporosis Day.
In Ireland, the Irish Osteoporosis Society is dedicated to reducing the incidence of Osteoporosis and are the national experts regarding bone health. They provide support to people with Osteoporosis, their families and spread awareness of the signs and symptoms.
They also run the National Osteoporosis helpline, a service CEO Michele O’Brien has been running for 19 years.
Letters the Irish Osteoporosis Society have received from people who had phoned their National Osteoporosis helpline.
Dear Michele and the IOS,
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 tumor 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 tumor 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.
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!
Regards,
Sinead (35)
“The woman below had become wheelchair-bound due to so many broken bones in her spine when her son phoned us. Her son had been told by 3 consultants in Dublin that nothing could be done to help her!”
Dear Michele
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.
Best Regards,
Vincent
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.
Regards
Ann
Dear Michele
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.
2 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 hips 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 Euro 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) Charity 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.
Kindest Regard,
Pete
