I live in constant agony that’s like a gunshot wound – but clueless doctors label me a ‘drug-seeker’
SITTING in a hospital ward as she awaits her eighth blood transfusion this year, Sarah-Jane Nkrumah knows the procedure is vital to keep her alive.
But because of a blood shortage, the NHS has issued an amber alert, which means non-urgent surgeries may be postponed and blood will go to patients in the most need.
Hospitals have said they will continue blood transfusions to treat people with long-term conditions, but Sarah-Jane, 28, is terrified hers will be affected — because they are the only thing that help keep her Sickle Cell Disease (SCD) in check.
She says: “Myself and a lot of my friends with the condition rely on the transfusions to live, so we are extremely worried.”
SCD is inherited and affects more than 15,000 people in the UK, where it is the fastest-growing genetic disorder.
Even more people carry the genetic trait.
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It’s most common in African and Caribbean communities and can be fatal if not managed properly.
TLC band member T-Boz has spoken about her battles with the incurable condition, as has actress Victoria Ekanoye, who plays Angie Appleton in Coronation Street, and Larenz Tate from US crime drama Power.
Sufferers develop abnormal, sickle-shaped haemoglobin — the substance in red blood cells that carries oxygen around the body.
It causes a shortage of red blood cells and can trigger blood vessel blockages that ultimately lead to excruciating episodes known as sickle cell crises.
These can affect different areas of the body, usually for up to a week.
As a result of her condition, Sarah-Jane regularly needs an exchange transfusion to replace her blood with fresh blood from a donor.
As an infant she was diagnosed with SS, the most severe form of sickle cell, and has experienced agonising crises all her life.
She says: “As a child I didn’t get it. All I knew was that I had this sickness that made me different from other kids.
"It made me miss parties, holidays and school trips.
"I had to go into hospital and be on painkillers such as morphine and codeine, which made me miss a lot of my childhood.”
The pain has intensified as she’s got older.
She says: “I once spoke to someone living with the condition in America who had been shot.
“They told me the pain from the gunshot wound was nothing compared to his sickle pain.”
Some people with SCD are able to manage their condition with painkillers at home, but for Sarah-Jane, the agony she goes through means she is rushed to hospital at least once a month.
'IT'S HORRIBLE'
She reveals: “Recently, I’ve had a lot of crises.
"They can be triggered by anything from extreme cold or hot weather to stress.
“Sometimes, I’d just be at home or with my friends and feel the terrible pains in my arms, my legs, my chest — basically, anywhere blood flows.
“If I’m unable to manage it at home, I have to call an ambulance and go into A&E so I get morphine every hour on the dot and fluids too.”
The veins in Sarah-Jane’s arms have now gone weak from the IVs and blood transfusions.
She says: “Doctors put a line in my groin that will stay in for the whole day.
“It’s invasive and painful but, at the moment, it’s the only way I can get my transfusions.
“If I had a normal cannula put in, it wouldn’t last, meaning I’d just be poked and poked with a needle.
"I was once poked about 20 times. It’s horrible.”
Sarah-Jane’s condition has nearly killed her multiple times.
In July, she was hospitalised following a breakdown she suffered after her 79-year-old father’s death in March.
Her dad, Augustine Nkrumah, was diagnosed with renal medullary carcinoma, a rare type of kidney cancer associated with people who carry the sickle cell trait.
Sarah-Jane says: “I caught sepsis in the hospital as they were treating me for my crises.
“I had a line put in my arm. The line was infected with MRSA and got into my bloodstream. I became delirious — it could have been fatal if it wasn’t caught.”
Due to a weak immune system, sickle cell sufferers are at an increased risk of sepsis.
Infections, strokes and acute chest syndrome (a lung-related complication similar to pneumonia) are leading causes of death in sufferers.
Sarah-Jane has experienced a lack of awareness around the condition.
She says: “There are so many hospitals in the country that have no clue about sickle cell and how to manage it.
"A lot of nurses and doctors think we are just a bunch of drug-seekers.
"If you go to a hospital that doesn’t know about sickle cell, you often have to beg for medication and oxygen, even when you’re in so much pain.
“Going through agony and constantly begging doctors for pain relief is so traumatic, but you have to go through this your entire life.”
As well as her mental health, SCD has also affected her career and taken a toll on her love life.
She says: “I refuse to be with anyone who carries the sickle cell trait, so it can be difficult — I always have to ask these tough questions from the start.”
If people with sickle cell have children with someone who also carries the trait, there is a significant risk it could be passed on to their kids.
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Sarah-Jane now runs the charity Sickle Cell Unite () and organises blood drives urging black people with the O genotype to donate in order to save a life.
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“It only takes ten to 15 minutes,” she says. “It is so important. Without these donations, a lot of us wouldn’t be here.”
- To donate blood, see .
