09 September is PAO Awareness Day

PERSONAL STORY

Jane

I first felt pain in my back in July 2019, when my first baby, Benjamin, was just a month old. The shooting pains and spasms got worse and worse until I was in absolute agony, unable to sleep and struggling to care for my baby and myself.

I couldn’t take Ben to baby classes, as I couldn’t pick him up from the floor. I had to have help to get dressed and brush my hair. I visited the doctor and physio many times and was repeatedly told the pain was due to bad posture during breastfeeding.

Over the space of a few months, I lost 3 inches in height and my ribs sank into my pelvis. Several healthcare professionals commented that the height loss was shocking, but no one helped me or referred me for further investigations.

Gradually the pain settled enough for me to think about having a second baby, and Daniel was born in January 2022. I was diagnosed with sciatica during the pregnancy and experienced that same agonising pain again soon after the birth.

By now I had lost 5 inches in height and my mum had become seriously concerned. She encouraged me to really push for answers and finally a female doctor listened and referred me for an X-ray.

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The X-ray showed several spinal fractures, and later an MRI confirmed multiple fractures in ten vertebrae, including all five lower vertebrae. I was then sent for blood tests and a bone density scan (DEXA). This revealed my spine level was -4.1 and confirmed that I had severe osteoporosis at the age of 41.

My official diagnosis was eventually confirmed to be Pregnancy Associated Osteoporosis, a rare and life-altering condition. For two years I self-injected a daily dose of Teriparatide medication in the hopes of improving my bone density and reducing my chances of re-fracturing, and this regime was quickly followed by a bisphosphonate infusion to maintain any gains.


Due to my height loss, I have severe kyphosis and far less room in my torso. This has caused chronic pain, plus issues with sleeping and eating. I no longer look or feel like myself, and I can’t freely lift or bend.


Although this rare disease has impacted my whole life, and my children’s lives, it has also shown me how mentally strong and resilient I am.

I have a great support network of family, friends and other PAO mums, and I am proud of how far I have come since my diagnosis. I believe that things will continue to get better.

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