27 years ago, I was about to have my first baby. My husband and I were excitedly anticipating our new family life. At that time, I thought I was healthy and well, however, childbirth left me in agony and barely able to move.
Although I raised this with my GP, I was frustrated I was not taken seriously. I had to change GP in order to find out that I had pregnancy associated osteoporosis (PAO). My spine had collapsed in labour and after childbirth, leaving me three inches shorter. I was just told the disease was idiopathic (of spontaneous origin) and numerous tests over the years at many different hospitals gave no explanation as to why I had this bone disease.
Over the years, my husband, daughter and I have lived a limited and restricted life. I have experienced fracture after painful fracture – 24 known in total, before X-rays were stopped due to concerns over exposure to radiation.
I was repeatedly told by specialists they just didn’t know of, or had not heard about, this type of osteoporosis.
It was difficult because I was young and looked well. People would be incredulous, not believing that I was ill. It was incredibly difficult living with an unknown bone disease, which was also a rare type of a more widely known existing condition. Unfortunately for me, the long-term side effects of the bone disease treatment also led to breast cancer and a subarachnoid brain haemorrhage. Just some seven years ago, I was discharged by the specialists I was seeing, as my condition was ‘too difficult and challenging’ and was placed back under GP care. Facing the menopause, when women usually get osteoporosis, I was mentally and physically at rock bottom – I felt like I could not go on.
However, I was taken on as a rare disease patient at Addenbrooke’s Hospital under the Metabolic Bone Disease Unit, in addition to the Metabolic Bone Disease Department at the Royal National Orthopaedic Hospital in London. These specialists have provided me with amazing care and given me the reassurance that my situation would improve. It helped me view my bone disease in a different light: I realised that I have a rare disease. This has helped me to come to terms with my condition and people’s attitudes, as well as understand why my condition is unknown. Having access to appropriate specialist care has meant that I now participate in various rare disease research projects. I have also been given new treatments, which have stopped my constant fracturing and helped me to regain an inch and a half in height with improved posture. It has really helped my pain levels and quality of life – literally transforming my life.
PAO is known by various terms, but is basically a form of osteoporosis in pregnancy. It is gradually becoming more recognised. The Royal Osteoporosis Society have held meetings and established a support group (of which I am one of the volunteer co-ordinators), providing support, raising awareness and encouraging research. There is also an international Facebook group of women with the condition, which has led to new international research. It is particularly great that I can use my experience to support and help young mothers newly devastated by osteoporosis fractures and struggling or being unable to care for their children. We’re also not yet sure how my daughter or other children might be affected. The specialists are uncertain.
I have been married to my wonderful husband Martin for 35 years and have one beautiful daughter. I have carried out a variety of paid and voluntary charity/ non-profit work, for which I was awarded an MBE. I hope going forwards that rare diseases will continue to be further recognised, have additional support and that new research studies will provide some answers. Particularly for my daughter.
Further information about PAO can be found here.