Robert - Interview 28

Age at interview: 49
Age at diagnosis: 43

Brief outline: Robert was diagnosed with osteoporosis at the age of forty-three. Robert had to wait seven months before been referred to a bone metabolic specialist who sent him without delay to have a bone density scan. Now his osteoporosis is under control but he continues experiencing severe pain due to the damage caused by the condition.

Background: Married, two daughters; early retirement due to osteoporosis. Works as a volunteer for the National Osteoporosis Society. He thinks it is important to raise awareness about osteoporosis in men.

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Robert’s health problems began when his spine collapsed while on holiday abroad with his wife and daughter. Once in the UK cancer of the bone was suspected and he underwent a series of exams to test for that. One spine specialist suggested he undergo surgery to put a metal sort of cage to replace the vertebras that have collapsed and screw it to the vertebras below and above. Robert was in such a pain that decided to go ahead and had this surgical procedure.
Robert expected that after surgery he would be able to return to work and that his life would resume as before. Indeed he went back to his sales director job but the back surgery failed and he continued experiencing severe pain. He tried several pain relief medications but they didn’t work.
Robert understood that his only option was to give up his job due to his medical condition. Giving up his well-paid job was a terrible thing that affected him emotionally. He says that it is a male thing to see himself as the provider for his family. His low self esteem due to early retirement and his experience of severe pain led him to depression.
Doctors still hadn’t completely ruled out cancer but were at a lost at to why he was in so much pain. He was referred to a bone metabolic specialist who without delay sent him to have a bone density scan. Hence, nine months after his ordeal began he was finally diagnosed with osteoporosis. His initial reaction was of relief for not having cancer but it soon turned into anger towards the medical professionals that have failed to diagnose him. In particular, towards the spine surgeon who conducted an unnecessary procedure that has let him in constant pain.
Robert was initially prescribed Fosamax but he found it quite a hard regimen on his stomach. He then successfully campaigned - with the support from his metabolic consultant - to get the newly licensed drug; Forsteo (teriparatide). He took Forsteo for eighteen months and the DXA scan taken at the end of the treatment revealed that his bone density has increased by sixteen per cent. He is now taking Bonviva once monthly.
Robert’s medication for osteoporosis is working and his condition is now under control. Robert also attended pain management training and had sessions with a psychologist for about a year. He has learned of the importance to pace himself and to relax. He also indicates that he has learned to let go of his initial anger.
Robert explained that osteoporosis is not just a physical illness but that affect your entire life including relationship with family and friends. His wife is an important source of emotional support for him and he has learned to communicate his feeling to her. He feels robbed of his role as a father because of his reduced mobility and says that he get envious when he sees others running or playing football with their kids.
Robert explained that the pain he now experiences is because the vertebras above and below the metal cage have collapsed into it. Further surgical intervention is unadvisable but pain drugs have become gradually stronger and dosages higher. He now uses morphine patches. One thing that his experience has taught him is that there is a need to increase awareness about osteoporosis in men. Robert is an ambassador for the National Osteoporosis Society and in this capacity he travels in the UK and abroad talking about his own experience.


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