Living with sickle cell during a pandemic: ‘I felt alienated and depressed’

People with sickle cell disease fall into the ‘extremely vulnerable’ group in terms of Covid-19 (Picture: Getty Images)

The threat of coronavirus is a real concern for everyone, but the Black community has been disproportionately affected by higher death rates and poorer outcomes.

One reason behind this may be due to the prevalance of inherited conditions like sickle cell, which predominantly affects people from African and Caribbean backgrounds.

Sickle cell is a haemoglobin disorder, which causes the red blood cells to change shape – into a ‘sickle’ shape – which can cause blockages and damage to different organs.

Sickle cell causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. And living with this condition can make you extremely vulnerable to Covid-19.

‘During the pandemic, people living with sickle cell were advised to rigorously follow shielding measures in order to keep themselves safe. This is because people living with sickle cell fall into the extremely vulnerable group,’ says John James OBE, chief executive of The Sickle Cell Society.

‘Covid-19 poses a specific threat to people living with sickle cell. People living with sickle cell are already at a risk of serious life-threatening issues, as well as being at a significantly increased risk of catching infections.

‘At the Sickle Cell Society we have seen a significant increase in requests for information and advice through our helpline, with people wanting support and advice on a diverse range of topics from how they can best protect themselves and their families, the financial impact of staying home from work, initially questions around keeping their children home from school, and how they can keep protected whilst continuing to attend regular hospital appointments.

‘People who carry the sickle cell gene (sickle cell trait) aren’t more vulnerable to coronavirus infection (unless they fall into another vulnerable category), although many will be living with and related to people with sickle cell disorder and will want to ensure they are protected.’

But what is it like for patients living with sickle cell who have been forced to take additional precautions over the last few months?

Not only have they been dealing with the worry of their own health and the health of their loved ones, they are also being bombarded with scary stats about the high mortality rates in ethnic minority groups.

There is still not enough awareness about the implications of living with sickle cell (Picture: Getty Images/Maskot)

Laurel said that she felt like she would become a prisoner in her own home when she received a text and a letter telling her not to go out for three months.

‘How do you cope with a 12-week lockdown? I suppose the same way that you have always managed to cope with living with a chronic blood disorder. An illness that mostly controlled your childhood and years of trying to grow up as a normal teenager,’ says Laurel.

‘Yes, it all came flooding back to me and made me realise that this was exactly how I felt for years; out of control and not knowing what tomorrow would bring.

‘It was quite funny watching peoples’ reactions and the way they dealt with lockdown. It was just a reminder of how I felt locked down with an illness that didn’t allow me to do anything, go anywhere or be anyone. I felt so different, I was different, nobody could ever imagine that feeling unless they experienced it.’

Laurel says that over the years, coping with the stress of her condition has eaten away at her self-belief, and the stress of the pandemic brought all of those old insecurities back to the surface.

‘Every admission to hospital took away a bit of my confidence and caused me to feel alienated,’ she says. ‘I believe at that time I even began to feel a little bit depressed because of my situation, but I did not realise this was classed as depression.

‘However, I also was in “be positive” mode and turned a negative situation into a positive. My 12-weeks staying at home letter was filed away and I decided to make a 12-week timetable to try to achieve some of the things that I had put off, or had no time to complete because of life’s busy schedule.’

Laurel filled her days reading, studying the bible and learning French. She was determined to make the most of this time and control her own situation as best she could.

‘I divided my 12 weeks into working on updating my website, working on ideas for my new children’s book, building my skills with the Adobe creative packages, and doing some creative art work which would include painting some new canvases.

‘My family eventually joined me as the entire country was put into lockdown and everyone was busy either working from home or completing tasks that had been on hold because of lack of time. This was a new unexpected, uncontrollable situation for everyone not just me.’

For Laurel, and the thousands of others living with sickle cell, Covid is a scary situation because it is so new. Experts are still working out the long-term impacts and potential risk factors, which is an unsettling position to be in. But research is taking place.

Since March 2020, a national group of doctors and nurses looking after people with inherited anaemias – the National Heamoglobinopathy Panel – have been meeting to discuss how Covid-19 has affected their patients.

The group reviews guidance issued by NHS England and advises NHS England and patient support groups about specific Covid-19 risks. Hospitals across England have sent in anonymised data regarding the number of cases of Covid and what happens to people who get it.  

As of 6 May, 195 sickle cell patients had been reported with proven or suspected Covid-19. Of these, 175 were adults and 20 children. 

About three quarters of patients were admitted to hospital (146 people), and the rest were managed at home. Of the patients admitted to hospital, about a tenth needed intensive care (15 people). Of the 20 children, none required intensive care.

The picture is not yet complete, because some people are still being treated for Covid-19. However, the available results show that for every 100 patients infected so far, 92 have recovered and eight have died.

The people who died were more likely to have other medical problems such as heart disease, cancer, kidney disease, diabetes and high blood pressure.

Researchers say it is too early to determine whether patients with sickle cell fare any worse than the general population with Covid-19.

They also say adults with sickle cell disease should still be considered ‘clinically extremely vulnerable’ and follow government guidance about shielding.

How to stay safe if you have sickle cell

  • The advice to ‘shield’ has been paused. From 1 August, the government is advising you to adopt strict social distancing rather than full shielding measures.
  • You can go to work, if necessary, as long as the business is Covid-safe. If possible, it is still safer to work from home.
  • Children who have sickle cell can return to school or college, when this is possible, in line with their friends and classmates. Children should practice frequent hand washing and social distancing.
  • You should remain cautious as Covid-19 can be a severe infection, and may cause more complications in some people with sickle cell disorder.
  • Some people with particular complications of sickle cell disorder might be advised to continue to shield after 1 August by their doctor. 
  • If you are particularly worried about stopping shielding you should discuss this with your sickle cell doctor or nurse specialist.

The Sickle Cell Society

‘Sickle cell disease caused me to be so angry and even now sometimes when I feel low I question: “Why me?”’ says Laurel.

‘That voice then whispers in my ear: “If it wasn’t you, it would have been somebody else”. Then I humbly take that thought back because I would not wish sickle cell and what I have gone through on anybody else.

‘I was born a fighter, I am living as a fighter and I will die a fighter. I will continue to raise awareness for sickle cell disease in whatever way I can because although sickle cell disease is not who I am, it is part of me and I need to take ownership so that it does not take over my life.’

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