Coronavirus: How sickle cell families are coping
- Published
Elaine Tappin compares the pain of a sickle cell crisis to having somebody hammer on her bones
Sickle cell disease is a life-threatening condition affecting about 15,000 people in the UK, predominantly those from African and Caribbean backgrounds. Four women with experience of the condition explain how coronavirus is making life even more challenging.
"The pain is indescribable - it's like someone's hammering your bones," says Elaine Tappin.
Sickle cell disease brings a further fear for Ms Tappin and other sufferers. Since it can damage the lungs and spleen, it puts them at higher risk of serious illness - or even death - from Covid-19.
That is why, despite people in England, Scotland and Northern Ireland no longer having to shield against coronavirus, she is continuing to do so.
"We are in the group that could become seriously ill. I'm not going out to see anybody and nobody's coming to my home," said Ms Tappin, of Ipswich, a member of support group .
During one recent "crisis" episode, she went for a bath because hot water eases the worst of the symptoms. But just getting there proved a struggle.
"For me to get up the stairs was a major, major, painful incident. It took me about 20 minutes to get up there because [of] the pain, every time I put my foot down," she said.
She ended up taking morphine and had to remain upstairs because it was too painful to go downstairs.
Vivica, who has sickle cell disease, with older sister Chelsea and mother Caroline
Vivica, 10, lives elsewhere in Suffolk with her older sister Chelsea, 20, and her mother Caroline.
Since lockdown began in March, Vivica has spent more than eight weeks in hospital - not for Covid-19, but for sickle cell-related illnesses.
"We are literally continuing with the lockdown," said Caroline.
"Right now, people think the virus has gone but the virus is still as strong as it was in April and May."
Chelsea is helping her younger sister manage her anxiety around post-lockdown life
To ease the impact sickle cell disease can have on mental health, patients are offered a psychologist as part of their treatment.
"Right now, my daughter is really scared," said Caroline.
"Even if she hears somebody knocking at the door, she thinks that person is coming to infect her. And therefore, genuinely, she does not want to get out of the house."
It remains unclear whether Vivica will return to school in September.
Her mother desperately wants her to be able to go back as long as she is safe which, in Vivica's case, would mean being given near one-to-one tutoring away from other children.
Sickle cell disease
It is caused by inheriting the sickle cell gene
In the UK, it is most commonly seen in people of African and Caribbean backgrounds
People with sickle cell disease do not make haemoglobin properly, which means their red blood cells can become rigid and shaped like a crescent or sickle
The main symptoms are anaemia and episodes of severe pain, known as sickle cell crises, which are treated with strong painkillers such as morphine
People with sickle cell are at risk of complications, including stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection)
A medicine called hydroxyurea can help to reduce the number of painful crises
Life expectancy for someone with sickle cell disease tends to be shorter than normal
The only possible cure is a bone marrow transplant, but this is only possible where a suitable donor can be found and only offered to children under 18 in the UK due to the higher risk of it being unsuccessful in adults
Source: NHS England/Sickle Cell Society/Sickle Cell Suffolk
It is a concern shared by Jemima, whose daughter also has sickle cell.
Jemima is contemplating continuing with home-schooling next term.
"My days are taken up with being the teacher, the cook, the entertainer, the headmaster, and then my work is done in the middle of the night and at the weekends, and then I push everything through by Monday morning.
"We just have to roll with the punches, really."
Something as seemingly simple as online grocery shopping becomes a complex ritual with sickle cell families, who have to take extra steps to prevent infection from Covid-19.
When her delivery arrives, Jemima asks the driver to leave the items in bags outside.
"And then I have to go and spray them, leave them for a few hours before taking them to the disinfectants portion of the back garden and wash them down with disinfectant before taking them indoors," she said.
Annetta's 17-year-old son, who has talents in both music and graphic design, is having to shield because of sickle cell
Annetta's 17-year-old son has sickle cell disease. He has not seen his cousins since before the lockdown.
Seeing the impact of isolation on him had been "heartbreaking", she said.
"He's very, very nervous about starting college; going into the college environment and being around other people that don't understand," she said.
"He wants to further his life and get on, but at the same time he knows the risk that he's taken with his health."
For Annetta and her son, even going for a simple walk has been an all-too-elusive enjoyment.
Walking round the block is "not an option" because there are too many people and Annetta cannot be certain they will social-distance from her or her son.
Instead, she drives out to more remote rural locations where they will encounter few, if any, other people.
She and the other mothers who spoke about the condition hope to promote greater awareness of sickle cell disease.
"The important thing, really, is just to get the awareness about sickle cell and the impact of sickle cell on the lives of sufferers but that, more importantly, it's what you can do to help and assist a sickle cell sufferer to live a normal life," she said.
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