My ‘butterfly skin’ agony as greedy Brits have stockpiled all the paracetamol amid coronavirus outbreak – The Sun

FOR the ordinary, healthy Brit, catching coronavirus is a worrying thought. Within just a few months, the disease has ravaged the world, killing nearly 8,000 in the UK alone.

Yet for Britain's 1.5 million most vulnerable – like me – it's a truly terrifying, anxiety attack-inducing prospect, made worse by the countless stockpilers and sunseekers who are selfishly risking our lives.

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I was born with 'butterfly skin', or epidermolysis bulllosa (EB), an extremely rare, life-threatening condition that makes my skin blister at the slightest knock and causes second-degree burns across my body.

I'm in agonising pain every single day, and have been mistaken for an acid attack victim. 

Selfish Brits stockpiling vital drugs

Paracetamol is my only relief, taken every four hours, in set doses. It's the only medication I can use: strong painkillers trigger hives on my skin, which leaves me with red, unbearably itchy areas.

Yet now, for the first time in my life, I've been unable to get paracetamol from my NHS pharmacy.

This is partly thanks to coronavirus panic-buyers, who have depleted supplies at chemists around the country. And it's the same at high street pharmacies, where I've been able to get paracetamol in the past.


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While I know some people with chronic illnesses will be stocking up on paracetamol out of fear – and I don't blame them – other, healthy Brits are stockpiling boxes in their medicine cabinets 'just in case'.

To them, it might seem like a sensible idea in case they come down with mild illness in the future.

But to me, it's utterly selfish to buy more of the drugs than they need.

It's yet another worry for people like me living with agonising conditions at this unprecedented time.

Blistering 'butterfly skin'

I was diagnosed with the most severe type of EB – Recessive Dystrophic EB – shortly after my birth 32 years ago. My family knew something was seriously wrong when I was born with no skin on my foot. 

A specialist dermatologist confirmed the condition, which is caused by a lack of collagen protein in the skin. It's incurable, progressive, and puts me at a greater risk of developing skin cancer – which I did last year. 

Because of my blisters and burns, life can be hard.

My hands are scarred and 'mittened', with my fingers fused together by scar tissue. Whenever one of my skin wounds heals, it quickly breaks down again, so I have regular bandage changes every day.

The corneas of my eyes and the inside of my throat are affected, too.

Sometimes, I struggle with painful, blurry eyes, or find it difficult to eat.

Eating can be difficult due to blisters in my throat… there's been more than one frightening occasion where I've got food stuck in my throat in a restaurant

There has been more than one frightening occasion where I've got food stuck in my throat in a restaurant and had to run to the bathroom to cough it up, before coming back as if nothing's happened.

Fortunately, I have a great group of friends who have always supported me.

Over the years, I have got used to – and enjoy – my unpredictable life. I work as a celebrity journalist and have interviewed the likes of Michael B Jordan, Samuel L Jackson, and Spiderman star Tom Holland.I have also never let my blistered feet stop me going out with friends: I even wear heels.Yet everything has changed with the coronavirus outbreak: now, I have fear instilled in me.

Myra, who works as a celebrity journalist has interviewed numerous stars, including actor Tom HollandCredit: Supplied
She says everything has changed with the coronavirus outbreak – she is now racked with fearCredit: Supplied

Too scared to go to hospital appointments

When I heard about the virus, I had flashbacks to 2007 when I caught the flu.

It was one of the worst experiences of my life – from the fevers and pain everywhere in my body to constantly going to the GP for different tests. And from what I've read, COVID-19 is much worse. 

My fear of getting the virus has stopped me going out since early March, weeks before the lockdown came into place. I've even cancelled hospital appointments with my plastic surgeon because of it.

Last December, I was diagnosed with skin cancer and had to spend weeks in hospital, undergoing removal surgery and skin grafts. It was a very painful experience, both physically and emotionally.

I never want to be in such a vulnerable position again. 

Now, due to Government guidelines, I can't leave the house until June anyway, due to my vulnerabilities.

I live with my family in London – the epicentre of Britain's outbreak – so my mum avoids going out.

She makes home-cooked meals and buys everything online to protect me – even though, like with every other family across the country, it takes a month to get food deliveries.

She perhaps wouldn't have to be so cautious about her outings if selfish Brits weren't flouting lockdown restrictions by hanging out in groups and sunbathing in parks.

My nurses now turn up in masks, aprons and gloves – which they change up to eight times during the two-hour bandage changes

For the nurses who change my bandages every day, bringing coronavirus into our house is also a concern. They now turn up in masks, aprons and gloves – which they change up to eight times during the two-hour dressings.

My specialist EB nurses, from Solihull Hospital, West Midlands, have also been incredible, coming down to London every week to do my hand dressing, so I don't have to travel on public transport.

They certainly take away a bit of my all-consuming fear. Yet the minute I watch the news and see how fast the virus has spread – or how people are ignoring the rules – the panic returns.

13A few weeks ago, I watched a documentary on COVID-19 and instantly regretted it. It played on my mind, and when I woke up the next day, my chest was actually hurting from anxiety. 

After that, I made the decision to stop watching daily TV reports on the virus – though it's obviously difficult to avoid stories about it completely, such as the struggle to get hold of paracetamol. 

I experienced this myself when my NHS pharmacy recently told me they couldn't give me the paracetamol I needed due to a delay. This was something I couldn't even comprehend.

I watched a documentary on COVID-19 and instantly regretted it… when I woke up the next day, my chest was actually hurting from anxiety

With EB – which affects only 5,000 people in the UK – you can't take a dose even 30 minutes late.

It would be pure agony.

It's essential to manage your pain properly and have the necessary supplies of medication at home.

Luckily in my case, independent pharmacist prescriber Mohammed Harb, of web-based Pingamed Pharmacy, was able to send me some paracetamol the very next day, which filled me with relief. 

Online pharmacies like his are vital during this outbreak – where a soaring number of people are requesting medication on prescription and panic-buying piles of paracetamol in shops.

Yet you do need to have the means to pay privately – not a guarantee in this climate.

Today, despite my fear and daily struggles, I'm determined to see the positives.

I know some people living with EB across the world do not have the luxuries I do.

I have a brilliant family whom I'm isolating with, access to the best healthcare on the planet – the NHS – and the ability to turn to other independent medical services like Mohammed's when I need to.

They're frontline heroes, too: still working to help others in need.

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Professor Celia Moss OBE, a world-renowned dermatologist for EB, says people with my condition "have overcome many difficulties in their lives" – and she's certainly right.

Over the past three decades, I've suffered from corneal ulcers, choking scares, nasty wound infections, and mental health struggles. However, I've battled through them all.

And with the support of my friends and family, I'll get through this pandemic, too.

  • Myra documents her life with 'butterfly skin' on her Instagram page here

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