A national charity, based in Chard, Pregnancy Associated Osteoporosis (PAO) is presenting a stand at The Bath and West Showground to raise awareness.
The PAO Mums, including Karen and others in the South West, will also be raising awareness around forthcoming key dates such as EveryWoman Day, World Menopause Day and World Osteoporosis Day, including telling their stories to raise disease awareness. The Patient’s Association recently stressed the importance of patient experience for improving clinical care improvement. All the PAO mothers will be sharing their experiences in the hope they are successful in their push for change and heath care improvement.
Karen and other PAO-diagnosed Mums stepped forward in 2023 to support the new UK research and trying to raise general and healthcare awareness. Their aim is to try to prevent other mother’s experiencing the difficulties in diagnosis and the disease impact which they have had. They were aided by Karen’s nephew, a young Dad who had known about Karen’s disease impact throughout his life and a graphic designer based in Salisbury, who helped them with some new hard hitting graphics and a new campaign and ongoing support and advice.
Karen explains that for her, the disease has had a lifelong impact for the past 33 years on both her and her family – impacting their careers, finances, their physical and mental health and caused relationship difficulties and relationship breakdowns. Karen’s husband, Martin, has been interviewed recently for the RNOH’s qualitative new research into the disease mental health impact on fathers and partners.
The presentation will include details of current new ground breaking research in the UK into the disease, some of which has been funded by the Royal Osteoporosis Society, whose HQ is in Bath. This is the first major new UK PAO research in over 30 years.
And some of the stories of PAO Mothers accessing healthcare in the South West of England and Bath.
Karen, who lives in Chard and runs POA Mums said: "We are not just presenting generally about the disease, but also presenting about PAO increasingly being in & relevant to the news – not just the medical and maternity news, but also the general news”.
“I moved to the South West of England four years ago, to be nearer to my daughter, who lives & works in Bath. It has been a real shock to find that healthcare professionals in this region have usually never heard about osteoporosis associated with pregnancy and often query if it is a real condition.”
POA is a debilitating bone disease, affecting young women, who usually suffer vertebral (spinal) fractures in the late stages of pregnancy or in the first three months after giving birth.
It can then have an ongoing and in some cases a lifelong impact on mother and families. This is a rare type of Osteoporosis, with unknown numbers, but recent research suggests the disease might affect 4 in 100,000 women.
Dr Sarah Hardcastle is a specialist clinician at RUH Bath Hospital, where she cares for PAO patients in clinic and she has recently written a research article on the disease. Dr Hardcastle is co-presenting with PAO diagnosed Mum and PAO Group co-ordinator Karen Whitehead MBE.
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