Osteoporosis is absolutely not the end of the world and has not deterred me from doing anything that I want to do, says Suzanne Hewitt from Wolverhampton

I developed osteoporosis in pregnancy when I was in my thirties, which is very rare so my journey to diagnosis was long and difficult. It began in the third trimester of my pregnancy, when I started experiencing hip ache and back ache, which I put down to a normal effect of pregnancy. But when I was delivering my son, the epidural had no effect on the pain in my hips and back, and after he was born I was in excruciating pain. Despite my high pain threshold I was unable to get out of bed to feed him and was considered a bad parent by the medical team at that time. Looking back at it, I was treated very badly. Some of my friends are doctors and they came to the hospital to visit my new son, Edward, and told the medical team that my pain was out of character and that they needed to look into it. However, after a couple of days I was able to get up and so I was discharged.

My back ache was still terrible and my local doctor suggested it was arthritis; another doctor said it was because one of my legs was slightly shorter than the other (it isn’t). Nothing made sense and I still struggled to pick Edward up.

When Edward was six months old we had him christened, and my friends were shocked to see how my body had changed. I felt as though I’d shrunk and changed shape. So the day after the christening I went to my nearest private hospital and refused to leave until someone had seen me. A blood test discovered that my blood contained a high level of bone content. After more tests, I was diagnosed with bone cancer, and my husband was informed that I was “probably on my way out” and the only thing I could do was rest.

At that time my mother had pneumonia and my husband developed glandular fever and was effective bedridden. The local authority wanted to take my baby son away as we couldn’t look after him. Thankfully my husband’s parents were able to pay for a mother’s help, who’d had seven children herself, to come and look after us. She was fabulous and stayed with us for 10 years.

Diagnosis – at last

My neighbour was a GP and realised that I wasn’t dying and put me in touch with a general physician contact he had, who offered to do some research into my case. After three days in a medical library, he decided that I had osteoporosis that had developed during pregnancy, a very rare situation. An X-ray showed that I had three fractured vertebrae and the bones of a 70 year old. A bone biopsy confirmed the diagnosis. I was devastated but on the upside, it wasn’t bone cancer! They didn’t know how to treat me but suggested I start exercising, ate a calcium-rich diet and stop breastfeeding – and as soon as I did that I started feeling better.

Gradually I improved and 12 months later was relatively back to normal. My fractures healed but my bones never fully recovered. Soon after I was diagnosed my father saw an advertisement for a meeting of a local branch of the National Osteoporosis Society and insisted I went along. I met wonderful people, set up a new support group in Birmingham, and later one in Wolverhampton, and today am an ambassador for the charity.

Positive attitude

I’m 67 years old now and am very active, still teaching part-time and am involved in lots of societies such as NADFAS and the Women’s Institute. In all, I’ve fractured around 10 more bones… in my wrists, toes, feet, elbows and vertebrae and have been on various medication over the years.

About 18 months ago, after I fractured a vertebra in the classroom I had another X-ray, which showed my bones had deteriorated. I was put on denosumab (a six monthly injection) and hormone replacement therapy (HRT). A recent scan showed that my bones haven’t got worse since then, but they haven’t improved either, so I’m hoping that staying on the denosumab for a while longer will help.

My advice for anyone who has been diagnosed is to find out as much as possible about it. Some GPs don’t have a huge amount of knowledge in the area, so get advice from the National Osteoporosis Society, either from its helpline or one of the local support groups.

Take exercise, improve your diet and take supplements if you need to. Osteoporosis is absolutely not the end of the world and has not deterred me from doing anything that I want to do.

For more on the National Osteoporosis Society click here.

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