Karen Whitehead MBE

Karen has lived with osteoporosis for over 30 years, after an initial diagnosis of Pregnancy Associated Osteoporosis (PAO).

Karen was pregnant at age 28 and eventually diagnosed with Pregnancy Associated Osteoporosis age 29, back in 1991. Initially her complaints of sudden, severe back pain from just turning over in bed in the last few weeks of pregnancy were dismissed by her GP and maternity care. They all insisted it was just the baby’s head engaging, even though Karen was struggling to move at all. She went into labour without feeling a single contraction, just horrific back pain and then felt her back give way during labour.

Karen was discharged from hospital after 24 hours, even though she could not pick her baby up and was struggling to breastfeed with her back pain. Different physiotherapists insisted she had just pulled muscles, but one physiotherapist provided ‘hands on’ treatment, when Karen felt her back “go” again. Healthcare professionals dismissed he husband Martin’s observation that Karen suddenly seemed dramatically shorter - telling him not to be silly.

A long and difficult journey to correct diagnosis

Karen and Martin’s joy and excitement of having their first baby was completely overridden with worry. Family put their lives on hold and travelled long distances to look after both Karen and the baby. Karen by now was really struggling to move around, kept getting stuck in bed and chairs, struggling to get out of them due to pain. She could not even put her hands up to wash her face.

Under healthcare professional pressure from GPs, midwives, health visitors and physiotherapists, all insisting she needed to care for her baby herself and threatening contacting social services, Karen tried to pick her baby up from their cot, only to feel her back “go” again and to drop her baby with the sudden, intense pain. Karen collapsed on the floor, crying her heart out. Martin’s pleas to their GP to help her were met with the comment “All women get emotional after childbirth”.

All healthcare professionals repeatedly insisted this was normal pregnancy pain. A GP friend though advised changing GP surgery - where the new GP at long last listened and believed them that something was wrong and started investigating what this could be. But they had never heard of osteoporosis associated with pregnancy and instead were investigating the possibility Karen might have other conditions such as multiple sclerosis or rheumatoid arthritis – conditions which the GP knew could arise in pregnancy. Eventually, when all the tests came back negative, the GP bowed to pressure from Karen’s husband Martin, who played sport and who had kept insisting he thought her back was injured and requesting an x-ray. As soon as Karen was x-rayed, the hospital staff phoned her GP surgery and insisted she went straight there, as the GP was opening the surgery just to see her. On the journey there, Karen just kept saying to her husband “I’m dying, aren’t I? The pain is that bad….” The GP asked if she had ever had back pain previously or been in a car crash. They said they had never seen anything like this - her back was broken in four places. Karen had felt her back “go” four times, with extreme and worsening pain each time, but this had been dismissed each time and on an ongoing basis by different healthcare professionals. Karen’s husband asked if this was why she seemed so much shorter and she was then measured for the first time and found to be three inches shorter.

Height loss, extreme pain and mothers struggling to care for their babies and themselves are all “red flags” for pregnancy associated osteoporosis but these were not picked up by any of Karen’s healthcare professionals, who had never heard of osteoporosis related to pregnancy.

Karen and Martin believed that discovering the issue would resolve their problems, unaware that it was only the beginning. GP referral to an endocrinologist eventually led to a DXA scan and a diagnosis of “osteoporosis of pregnancy” – as it was then called in the UK. The diagnosis took several months since Karen’s first back pain. She would find this rare type of osteoporosis was known by different names throughout the world and the name often changed over the next 30 years. Her DXA score was severely osteoporotic at -4.52 and Karen was told, age 29, that she had the bones of a 90+ year old. She was told not to lift or carry her baby to allow the fractures to heal and advised of the need to be careful to avoid further fractures. Social services threatened to take baby Eirian into care if Karen and Martin could not cope with looking after her, and so they sold their car to pay for a live-in nanny, until Karen struggled to return to paid work, on high-dose painkillers.

Extensive endocrinologist testing, including a bone biopsy, revealed no cause for Karen’s osteoporosis, beyond the fact it was somehow related to pregnancy. There were no risk factors and no known family history of osteoporosis. New tests and DXA scans of all Karen’s immediate female relatives revealed they all had strong bones. The only anomaly found was hormonal, in that Karen had low testosterone, but at the time this was not felt to be significant and it was found to be controlled by putting Karen on the contraceptive pill – with the medical recommendation to stay on this until menopause and then switch to HRT.

Karen was passed around many different specialists for the next 20 years, with the usual description of “a delightful patient but a difficult and challenging case of osteoporosis of pregnancy”. Karen was told that if she became pregnant again, she would have to have a termination, because her bones were not strong enough to support another pregnancy. She now knows other PAO diagnosed mothers who have had terminations under medical pressure, after falling pregnant after having osteoporosis diagnosed around the time of their previous pregnancy.

Recurring fractures destroyed her quality of life

In the UK no osteoporosis bone treatments were licensed for pre-menopausal women. Karen though was given bisphosphonate bone treatments – all that was available at that time - which did nothing for her DXA score and did not stop her fracturing. She continued to fracture and fracture and fracture – the exact number is unknown, but at least 24 were identified on x-ray (spine, ribs, hands, feet and hip) before imaging was stopped, due to radiation overexposure concerns. The hip fracture led to a long period of time as a wheelchair user, because it was not thought the other hip bone was strong enough to support her body on crutches. This and all the other fractures took a long time to heal, but all did eventually. Karen was repeatedly breaking ribs just going over speedbumps in the car. She had 14 vertebral spinal fractures causing 5 inch height loss.

For 20 years Karen’s quality of life was destroyed by osteoporosis - and not just her life, but her daughter’s and husband’s lives. Her daughter had lived with her mother’s osteoporosis and ongoing fractures all her life, while her husband had also lived with this for the majority of their married life. The disease impacted physical and mental health, finances, careers, relationships and caused a difficult and restricted lifestyle, trying to avoid further fractures.

Coming up for the average age of 51 when women in the UK go through menopause and 1 in 2 women will lose up to 20% of their bone strength in the first 5-7 years post-menopause and be diagnosed with osteoporosis, Karen was in despair – having already lived with severe osteoporosis for over twenty years. She was in chronic pain and living with constant fear of fracturing. She was unable to work, felt such a burden on her family and was terrified of the future. Karen decided to pursue assisted dying abroad at the first sign of menopause. Instead serendipity struck and she had a late menopause, while a new specialist offered her a consultation and fought to obtain new anabolic bone treatment for her, via exceptional UK healthcare funding. Since starting anabolic treatment over ten years ago, Karen has not had a single fracture and her DXA score has improved from severe osteoporosis to a more normal DXA score for her age.

Despite numerous medical challenges, still actively managing her bone health

Karen also met a specialist osteoporosis physiotherapist over ten years ago, who specialised in treating younger women with premenopausal osteoporosis. Their medical care improved Karen’s posture, strengthening her back muscles, regaining her two inches in height, eliminating 3.5 inch wall to tragus/occipital distance and reducing both Karen’s kyphosis and pain levels.

However, the impact of all the numerous past fractures remained, plus various side effects from the bone medications, which were all yellow card reported in the UK by different hospital specialists, including life-threatening recurrent cellulitis and eye cataracts. Just over five years ago, a late menopause and long term retention on the contraceptive pill had led to high blood pressure. On the same day, Karen was diagnosed with both breast cancer and a grade 3 SAH brain haemorrhage and critically ill in hospital intensive care. Having recovered from both after surgery and treatments, Karen was taken off the contraceptive pill, with Oncologists insisting that bones may need oestrogen but breast cancer doesn’t. She was plunged into a sudden, severe, medical menopause and also diagnosed with complex PTSD, triggered by medical difficulties and relating back to having lived so long with this rare and unknown type of osteoporosis and the disease and medication direct and indirect impact.

Over Covid Karen was placed on the UK Highly Vulnerable List of people, due to past double pneumonia & pleurisy attributed to height loss from the 14 osteoporosis vertebral fractures causing limited lung capacity. UK Government instructions were to remain in your home. Luckily Karen had a vibration plate and a walking machine in her house already – for times when she feared walking outside and risking a fall and fracture in icy and slippery weather. She appealed to a PT friend, who co-owned a gym and had a University master’s degree specialising in bone health. They started up new virtual Building Better Bones exercise classes, both live and recorded, which were provided free during all the Lockdowns and attended by osteoporosis patients worldwide. The classes still continue today, with a supportive WhatsApp discussion group. Karen also joined various osteoporosis Facebook groups worldwide.

A passionate advocate for PAO awareness, research and patient support

After moving to a new part of the UK to be closer to her daughter, Karen realised how unknown this type of osteoporosis still is medically. She repeatedly faced healthcare professionals saying they had never heard of osteoporosis arising around pregnancy and querying its existence. Those who were aware of the condition seemed uncertain medically, with one senior consultant saying “Karen - you are like a unicorn or a fairy tale… one of those rare conditions we hear about but are not really sure exist and we never ever expect to see a patient with one”.

Karen began her career as a research librarian and then moved to charity work, both paid and voluntary, for which she was awarded her MBE by the late Queen. She was a patient advocate from 2019-2022 with the UK’s Royal Osteoporosis Society (ROS) Osteoporosis & Bone Research Academy and is the patient-researcher in new ground-breaking UK patient-led and centric research into PAO by the University of Edinburgh with final research results expected in 2025. Karen has been a member of the Royal College of Physicians Fragility Falls & Fractures Initiative, among other charity and voluntary roles. Karen is currently a member of the NICE Osteoporosis Guideline Update Committee, the scope of which is risk assessment, treatment and prevention of fragility fractures in all adult patients in England and Wales aged over 18, with the new UK Guideline due out in 2025.

In 2023 Karen met in person with some newly diagnosed young PAO Mothers. Their stories and her own new healthcare experiences made her suddenly realise that nothing had changed in the UK medically in over 30 years, since she was first diagnosed. PAO Mothers are today still experiencing delays and difficulty in diagnosis and then difficulty with their clinical care and obtaining treatment. This is despite the fact Karen knew PAO Mothers who had stopped fracturing and gone on to have further children after Teriparatide (Forsteo) treatment.

PAO is currently still such an unknown type of osteoporosis, with healthcare professionals largely unaware of the condition. There is however, a real community of diagnosed mothers worldwide, with a private international Facebook group established ten years ago by a mother in Australia. This international group has championed research and via this group Karen and other PAO-diagnosed mothers worldwide have participated in new worldwide research. An informal supportive and active UK network of PAO Mothers has also existed for over thirty years.

Karen and the UK patient network of PAO Mothers stepped forward in 2023 to support new UK research. Different types of PAO research is being carried out by the University of Edinburgh, the RNOH and the University of Oxford. They also decided to see if anything could be done to improve PAO awareness in the UK, along with the support and help of interested and knowledgeable UK researchers and specialists. Karen and other UK mothers have now shared their stories and extensively presented, often along with specialists and researchers, for patients and healthcare professionals at different events and also written or co-written various articles, primarily for healthcare professionals about this rare type of osteoporosis.

Karen has found when people hear about PAO, young women come forward who are struggling with severe pain around pregnancy but remain undiagnosed. As well, older women with an osteoporosis diagnosis made post-menopause in old age often talk about having severe pain in pregnancy or the fact their back “broke” or they had fractures around the time of pregnancy, but they were never diagnosed with PAO at that time. Karen therefore really feels osteoporosis around pregnancy is very much under diagnosed.

This type of osteoporosis is still very much unknown, particularly among key front-line healthcare professionals. A 2024 IOF Bone Cast Webinar confirmed that long-term management of the condition and the ongoing clinical care of PAO diagnosed mothers is also currently uncertain with no medical consensus. The new UK research is investigating both the physical and mental health impact and also investigating causes, the disease’s natural history, and its response to treatment.

Karen has now lived with osteoporosis for well over 30 years and has recently also been diagnosed with osteoarthritis, spinal cord compression from new bone spurs, bursitis, sciatica, mild scoliosis and Baastrup Syndrome (kissing spine). It is unknown what happens going forwards into old age. Karen has continued being looked after long distance by a PAO Specialist - rheumatologist Professor Richard Keen in the Metabolic Bone Clinic of the Royal National Orthopaedic Hospital in London. But UK healthcare systems mean she has to also access a lot of medical care locally and so she also sees orthopaedic spinal surgeons in Taunton in Somerset.

Family support has always been crucial, and especially so amid uncertainty for the future

The future is daunting for anyone diagnosed with this form of osteoporosis. Despite now receiving expert care from a knowledgeable bone specialist in the UK, Karen admits she still fears what lies ahead.

The short and long term bone health of the children of PAO diagnosed mothers is also unknown, particularly for daughters wanting to have children of their own. Karen says that she would love to be a grandmother, but does not want her daughter to go through her osteoporosis experience.

Karen’s daughter Eirian has had consultations about pregnancy, with UK medical advice for her to flag her mother’s story and her family background. To ideally have a DXA before and after pregnancy, to report any sudden new pain, to have ongoing height measurement. She has been told that a caesarean birth places least strain on the skeleton and to not breastfeed, as this depletes bones of calcium.

Karen says it is truly heart breaking this devastating type of osteoporosis is still so unknown, some 70 years after this was first reported medically in 1955 in healthcare professional journal, The Lancet. While more research and greater healthcare professional awareness and knowledge of this rare type of osteoporosis is still required.

Despite everything she has been through, Karen insists that she would not be without her daughter, Eirian, who is “her angel” and that it is Eirian and Martin (and also now her new son-in-law Matt’s) incredible support which has kept her moving forward trying to obtain answers and help for herself and other Mothers and their families.

Karen says it is heart breaking that in the UK PAO Mothers are still experiencing terrible delays in diagnosis and then difficulty with their clinical care and treatment, with inconsistent access to treatment around different parts of the UK. She also thinks many mothers are never diagnosed. So Karen truly hopes current initiatives and the current push for change by PAO diagnosed mothers and key researchers and specialists is successful.

About Karen Whitehead MBE

Karen has written a book about her life with osteoporosis, which also features the stories of other Mothers with this type of osteoporosis and makes widespread use of art – poetry, lyrics, paintings, sketches, etc. to convey information, with all proceeds going to charity.

She is a co-ordinator of the PAO Group in the UK and one of the founding trustees of PAO Mothers and PAO specialists and researchers who have applied in 2024 to the UK Charity Commission to set up a new UK Pregnancy Associated Osteoporosis (PAO) UK Registered Charity, with an initial aim of then setting up a new PAO website and establishing links with and becoming members of other charities and groups worldwide, such as the IOF.

For further information contact paopatientgroup@gmail.com or visit https://www.facebook.com/paogroupuk/