Karen’s story

What a past year it’s been, looking back, thinking of what has happened and how I’ve coped with Covid-19 as a rare disease patient living with idiopathic pregnancy associated osteoporosis (POA).

POA is a rare type of osteoporosis where women fracture in pregnancy or in the first few months after childbirth. Mainly spines or hips break. My spine collapsed in and around labour leaving me suddenly and unexpectedly over three inches shorter and unable to care for my baby.

Karen's Story with daughter

First lockdown

When lockdown was first announced, my husband and I thought that I probably needed to be careful. However, it made it very real to receive the NHS letter saying I was on the Clinically Highly Vulnerable List and should not leave the house, not even to put the bins out. I stood in the doorway for the weekly clap for carers and waved to the neighbours. My husband, furloughed from work, went out for necessary things, such as collecting my medicines from our local pharmacy. He was already used to this, with my variable condition often limiting my activities.

I appealed to a friend who co-owns and runs a gym, who started up a regular zoom Building Better Bones exercise class, free during the first lockdown and which has been ongoing ever since. A real lifeline. I also had virtual physiotherapy, osteopathy and other medical consultations. My two dogs were great company, even though I could not walk them while shielding.
Although I take various daily medicines, the six-monthly treatment for my rare bone disease was due in the first lockdown. Up until now, it had been insisted this was given in a hospital clinic, under specialist care. After a lot of liaison, my GP, specialist care centre and local pharmacy went ‘above and beyond’ their medical duty, so that I had the treatment arrive at home, for me to self-inject. It was important to keep me shielding at home. I had previously given myself numerous pen injections, but this was my first subcutaneous. In the end, my husband gave me the injection after watching a YouTube video. It was only later he told me he had first practised stabbing a needle into bacon!

My whole medical care quickly moved seamlessly into a new virtual pandemic world but I was already used to ‘Telemedicine’ as a rare disease patient. I personally preferred being phoned by different specialists from different hospitals, rather than having to go there. Some clinics – such as the pain clinic – closed and some of my ongoing monitoring scans and tests were put on hold. My GP kept regularly checking on me and tried to fill in any ‘gaps’.

It was strange being referred to new specialists and under their care virtually – I’m currently under the new care of three new different specialists, at three different hospitals, who I have never met in person!

Dealing with emergencies

I had two medical emergencies during the first lockdown.

The first was terrible cellulitis – a listed side effect of the bone treatment. My GP tried to manage and treat this so that I could remain shielding at home. I emailed the surgery photographs and they phoned or texted me queries. However, eventually I ended up in the hospital.

Around this time, I started getting appointments and going into hospitals for delayed monitoring scans and checks. Many procedures were changed though, for example drive-through hospital outdoor blood tests and other injections and tests were introduced.

It felt very strange being masked up and having to sanitise and how different the busy, bustling hospitals I was used to, now seemed – very eerie and empty, with everybody socially distancing. But it quickly became ‘the new norm’.

The second medical emergency I had was when something was spotted on a routine monitoring scan, which had been delayed.
I was already used, as a rare disease patient, to having to be proactive medically and advocate for myself and co-ordinate my own care. This became even more necessary and difficult during the pandemic and with these medical emergencies.
I had to contact the different hospitals and make personal data and image requests to ensure there was information sharing between all the various hospitals and specialists.

I’d had the same GP for thirty years, who was very ‘rare aware’. Previously I refused to move and lose their wonderful medical care, given they did not have long distance patients. Now though, ‘Telemedicine’ was the new norm, and I could be a long-distance patient with all my medical care.

The future

So, with lockdown over, I managed to do more, in particular to move to a new house nearer my daughter, who I’d missed not seeing for months. Despite ever changing restrictions and arrangements, I also managed to attend her pared-down hen party and wedding.

Karen's Story with dog

Hopefully life will return to normal in 2021, but I do feel my rare disease past experiences actually helped me cope with the pandemic.

You can learn more about pregnancy associated osteoporosis here.

To share your experiences of living with a rare condition please email [email protected].

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