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Patient Stories
During the period that Mrs Dhall suffered without a diagnosis, her mother suffered multiple fractures and was confined to bed. Still, no one spoke to Mrs Dhall about osteoporosis. Two years ago Mrs Dhall read in the Hindustan Times about a bone densitometry camp being organised by Osteoporosis Society of India. She got a bone densitometry test done and was diagnosed with osteoporosis and offered treatment. After spending years in agony, Mrs. Dhall got what she terms “a new lease on life”. Since joining a local osteoporosis support group, she says “My outlook on life is much better.” Mrs Dhall exercises regularly and has learned guidelines to reduce the risk of fracture. Mrs Dhall feels so much better in fact, that she was able to return to teaching. Although unable to work her usual hours, Mrs Dhall finds happiness in teaching shorter periods at a more leisurely pace. Her message to others is simple – “Do not put up with pain. Insist that your doctor test you for osteoporosis”.
One sunny morning Ram Gulam shared a pot of tea with fellow villagers and discussed an important judgment he was going to make later in the day at the village council meeting. Ram Gulam promised to objectively review both sides of the case, involving a land dispute, and excused himself to prepare for the meeting. While in the bath Ram Gulam slipped. "The fall was
trivial," he recalls, "but the pain was excruciating." He
could not stand and his family took him to the district
hospital, at Azamgarh, 40 kms away from his village. After an
X-ray, the doctor on duty diagnosed a fracture to the neck of
the femur and told him that he would need surgery. Not convinced that such a small fall could cause a fracture needing surgery, he was brought by his relatives to Delhi, some 400 kms away. There, Dr Sushil Sharma, an orthopedic surgeon closely associated with the Arthritis Foundation of India, explained that Ram Gulam had broken the head of his femur, commonly called a hip fracture, because of weak bones. The surgeon operated and Ram Gulam began a long and painful rehabilitation, during which his job as community affairs judge in the local council was provisionally taken over by another person. Only after four months could he resume light exercise and meet friends, Ram Gulam recalls. "But I remained skeptical of my doctor's diagnosis that I had osteoporosis – I was convinced that weak bones was a disease for women, not men," he says. While on one of his evening walks, Ram Gulam made a quick movement to dodge a stray dog. He slipped, fell, and fractured his other hip. Again he saw the surgeon, and again he had a hip replacement surgery. But this time his rehabilitation was much more difficult. He was bedridden. Once again he lost his panchayat decision-making position at the village community court. No longer would he wear the pagri headgear of a judge. His esteem was gone and he had become isolated. Today Ram Gulam is an ill and depressed man. He can walk with the help of walker, but at age of 65 he looks 90. He has started osteoporosis treatment, but after his two hip fractures the weak bones have already taken their toll. After his second hip surgery he went for a BMD check. His T-score was -4.9, and his spine showed evidence of vertebral collapse. He has lost 4 cm in height in the past seven years, and he is in constant pain. As he gets around the hospital corridors with his walker, Ram Gulam is totally heart broken – he has now been told that his job as the village council head has been permanently given to another man.
The following year he fractured a vertebrae, and a bone density test revealed that he had lost 70% of his bone mass. Dan has had more operations than he can remember, including seven surgeries on his hips to implant various plates and screws. Steel rods have been inserted in both his femurs. Dan, now 55, has fractured every vertebra in his back and fractures his ribs almost monthly. “My ribs or vertebra can fracture from simply coughing or sneezing” he says. In spite of his continuing fractures, Dan feels that “my fracture rate would be even higher without the medication that I’ve been prescribed”. He has lost 23 cm in height, and is mostly confined to a wheelchair. “I can no longer play catch with my son, ride a bike with my daughter on walk on the beach with my wife,” he explains. He was forced to resign his job as maintenance supervisor for a major beverage production plant. “Osteoporosis is not just a disease of the elderly,” he says. “It can be very debilitating and extremely painful”. Dan recommends that people talk to their physicians about the risks of osteoporosis and insist on a bone density test when it is indicated. In spite of the fact that Dan and his mother had osteoporosis, both of his sisters had to insist that their physicians give them a bone density test. “Both were found to have low bone density,” he notes, “and are taking medication so they don’t wind up like me”.
It wasn't imagination, it was osteoporosis. But the doctors didn't recognise it. It was only when I broke three ribs after walking into a door frame that it was suggested that the fractures, my height loss and painful joints might be caused by osteoporosis. It was at my suggestion that my GP finally contacted a specialist though it took almost a year for him to be convinced – almost in desperation as nothing else would explain my problems and after all, osteoporosis did not affect men. I think the doctor was as surprised as I was when the DXA scan indicated osteoporosis. As far as risk factors are concerned, I think the doctors should have recognized that height loss in a young man was not normal. And I had two years of chemotherapy for Hodgkins disease and five years of protease inhibitors, which might have had an effect. Perhaps we should modify the risk factors reported to doctors and radiologists to include medical treatments including cytotoxic compounds and antiviral drugs. And doctors should be better informed and more receptive to considering osteoporosis as a problem in men at any age. The good thing is that I now have a reason for my unexplained problems. The biggest embarrassment was that in order to get a bone density scan I had to attend a "well-woman" clinic and endure some rather hostile "get out of our women-only space" remarks from the other clients. This was not the first time, as I was also required to undertake a mammogram (an even more difficult and uncomfortable procedure on a man than a woman), since my caused a breast-enlarging lump to appear (which after a biopsy was found to be benign). All of which seemed to defy the myth that both osteoporosis and breast cancer are women-only problems and age-related issues. I am campaigning locally for recognition of these problems for both younger and non-female patients and also to establish more general clinics besides the 'well woman" clinic. Given the intimidating atmosphere I think that many men in my situation would not have undergone the necessary examinations. I hope my story may help other people in 'non risk' categories to get a faster diagnosis. I am relieved that my latest DXA scan shows marked improvement, following treatment with bisphosphonates and a high calcium and magnesium diet. I am now near the fracture threshold rather than well outside it. The height loss continues and I still have painful joints from osteoarthritis, due in part to the late diagnosis of my osteoporosis. I take things more carefully now and use a stick when walking since I don't want to fall. While I have not suffered any major fractures I still manage to break toes with monotonous regularity, but, perhaps fortunately, I also suffer from peripheral neuropathy so that after the initial pain I almost forget I've broken a bone. Now I also see that osteoporosis can be hereditary – my mother has osteopoenia. But there is a further positive note. When I was originally referred to the "Well Woman Centre" I received a very frosty reception. Now the clinic recognises it has a more varied role and has become an independent osteoporosis and osteopathy centre with a much more open attitude. Could this be due to the increasing number of male patients?
At the age of 25, I sustained four compression fractures in my spine when I slipped and fell on a ceramic floor. When I hit the floor, I felt unbearable pain course down my back. I almost urinated in my pants, the pain was so excruciating. I couldn't move my body and for a moment, I thought I was paralyzed. I couldn't stop crying. I knew something terrible had happened. The next thing I knew, I was in the emergency department. No one could understand why I was in so much pain and why I couldn't get up. A x-ray showed that I had crushed my vertebrae. The emergency physician was shocked to see what appeared on the x-ray. He said the damage to my back looked as though someone had hammered it with a baseball bat. Most people who fall and land on their backs usually have little discomfort or minor soft tissue injury. However, I was an exception to that rule. I experienced excruciating pain, and was not able to walk, shower, eat or dress myself without assistance. I truly felt physically handicapped. I discovered that I had lost one inch in height and my waist increased from 18 to 22 inches. I had trouble performing daily tasks such as cooking, doing the laundry and cleaning. I felt as though as I was eighty years old – fragile and weak. I kept asking myself: Why is this happening to me? I was so young and had my entire life ahead of me. I was newly married and was planning on having children in the near future. With the constant pain in my entire back, I began to suffer both physically and emotionally and went through a period of depression. This depression also put a strain on my marriage as I had trouble communicating and being intimate due to the unbearable pain. The pain medications made me feel sleepy and lethargic, but thank goodness they worked. Prior to my fractures, I had seen a few physicians complaining of back pain, but was told that I was guilty of nothing more than improper body mechanics! The apparent risk factors I had for osteoporosis were ignored, probably due to my young age. After all, osteoporosis had always been associated with hunched-over elderly women. I have a very strong family history of osteoporosis on both sides of my family. I also have a petite body frame and I am of Asian descent. I had low calcium intake throughout my adolescent years, because I had difficulty tolerating dairy products and barely focused on being physically active. In addition, my menstrual cycle was irregular virtually from its onset. At age 20, after suffering a severe weight loss (a pixie-like 87 pounds), nausea, and headaches, my new family physician ordered comprehensive blood and diagnostic tests. These revealed that I had hyperprolactinemia. This condition, along with the other aforementioned factors, were preventing me from attaining my peak bone mass, and as a result, my bones were thin. It was only the very painful experience of four vertebral fractures that forced an investigation of my bone health. A bone density examination revealed severe osteopenia in both my spine and femur regions, requiring immediate measures to be taken. To this day, I still have back pain and my body neither feels nor looks the same as it once did. I still have trouble cleaning the house, vacuuming, making the bed or being in one position for a prolonged period of time. I am now committed to preventing anyone from enduring the same experience that I did. It is vital for one to have optimal calcium intake, to practice regular weight-bearing exercise, restrain from excess caffeine or alcohol consumption, and to not smoke. These are only a few of the risk factors for osteoporosis. Osteoporosis is a multi-factorial disease that can happen to anyone regardless of gender or ethnic background or age. If there were more focus on the awareness and knowledge of different osteoporosis risk factors, achieving peak bone mass, and diagnosis of low bone mass in young women, perhaps I would not have fractured my bones. My experience has provided me with the motivation to be an advocate for women's health education. I believe all women, regardless of age or ethnic background, deserve access to health education and to be informed of the risk factors and preventative measures for osteoporosis. If I make a difference in even one woman's life, it is a reward that I will hold to be truly priceless. By Salima Ladak-Kachra, MRT (N), CNMTSalima is president of The Bone Wellness Centre (a facility for osteoporosis detection, prevention and awareness), where she performs bone densitometry testing and educates and counsels people with low bone mass and osteoporosis.
One year later she fell while walking in her home, and experienced another fracture, this time of the other hip. She underwent surgery for a second time and the doctors sent her back home, with some painkillers and rehabilitation instructions. After the two hip fractures, Sara's life changed. She has had to be more careful, and has not regained full independence. Today, Sara can't even take a regular bus, because the steps are too high for her to get in. It wasn't until a few years ago (about 17 years after her first fracture!) that Sara learned she was suffering from osteoporosis, and that the two fractures were not just a result of her being "careless". She now takes her medication, has received education about osteoporosis, and better understands what happened and how she can cooperate with her medical team. Sara is very optimistic, especially after seeing the improved results of her bone densitometry and laboratory tests. In Costa Rica, the Fundacion Costarricense de Osteoporosis is actively working to increase knowledge of osteoporosis among the public and health professionals. The Foundation's work will ensure that in the future no one will have to go without proper diagnosis and treatment as Sara did. |
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