This Is What People Living With Sickle Cell Want You To Know About Their Invisible Condition



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Originally posted on October 26, 2017, 09:57 GMT

Updated on October 26, 2017, 11:16 GMT

Sickle cell isn’t a new condition, but people who have it
told BuzzFeed News advances in medical treatment aren’t
coming fast enough and are calling for more scientific
research and greater investment to improve the quality of
their lives.

The inherited blood disorder, which limits the way the red
blood cells distribute oxygen around the body, can have a
huge impact on the lives of those diagnosed: The health
complications over time can be life-threatening and it comes
with regular bouts of crippling pain (known as a sickle cell
crisis), which means patients often spend a lot of time off
work or in hospital.

It’s also considered an “invisible condition”, which leads to
sickle cell being widely misunderstood. It affects black
people more than any other ethnic group – a community that
generally experiences poorer health outcomes because of
inequality.

In 2013, an inquest found a failure to follow basic
procedures contributed to the death of a young woman called
Sarah
Mulenga after she called the emergency services while
having a sickle cell crisis. Two trainee paramedics refused
to take the 21-year-old to hospital, her condition
deteriorated, and she later died.

The high-profile case led to a number of changes for the
better, but there is still a long way to go, those who have
the condition say.

Kehinde Salami, 36, told BuzzFeed News that many new
treatments were still not being made available on the NHS.
“The care and treatment for sickle cell has gone a very long
way in the last 15 years. However, there is a long way to go,
especially as sickle cell medications currently [available]
are not free on the NHS and there definitely needs to be more
progress.”

He also said while
Theresa May’s announcement that she’d be making organ
donation opt-out was a “step in the right direction”, it
would not benefit sickle cell patients on the whole as those
who need transplants are the most extreme cases and he
described needing one as “the last possible step before
death”.

Salami continued: “There are many patients like myself who
are in and out of hospital who are not in need of organ
transplants at present and who then are also at risk of
possible death as the treatment for the condition only
involves reactive medication [including] pain medication and
anti-inflammatories, which do not focus on curing the
condition. This here and the limited treatment for the large
population of sickle cell patients that fall in this category
is where heavy investment is needed.

“Sorry for the essay, but I’m actually pissed off.”

Jenica Leah, from Birmingham, said more work was needed to
improve understanding of the severity of the condition and
how it affects people’s lives, including having to pay for
prescriptions. In her case, she often has to make the journey
to London for treatments that aren’t available close to home,
which is another expense.

John James, chief executive of the Sickle Cell Society, said:
“The Sickle Cell Society has been actively involved with
clinicians undertaking
peer reviews of all sickle cell services in England. This
work has shown that improvements are being made. However,
there is still a lot of work to be done to ensure that every
patient living with sickle cell anaemia is getting the same
high quality of care.”

James said there was also an urgent need for more psychology
services to be made available for sickle cell patients across
the country, as well as more awareness training for frontline
staff to avoid “misinformed stereotypes such as labelling
sickle cell patients as drug addicts”.

Too often the mental health aspect of having a long-term
chronic condition is overlooked, he said. Addressing this,
experts say, can improve a patient’s overall wellbeing.

In a statement, NHS England said: “Sickle cell disease can be
an extremely debilitating, distressing condition and NHS
England is currently reviewing the way specialist services
are provided to ensure that patients receive the highest
standards of care, treatment and support. Whilst specialist
services are central to these improvements, it’s also
important that each part of the NHS works with patients to
improve ongoing care.”

BuzzFeed News spoke to four people who, in their own ways,
are working to raise awareness of their condition and lobby
for better care for those with sickle cell.

At just six weeks old, Jenica Leah from Birmingham was
diagnosed with sickle cell. The condition has a huge impact
on her life. “I feel like I am in a sickle cell crisis all
the time,” she says. As a result, the 28-year-old writer and
events coordinator now has to work only part-time to cope
with the pain.

One of the many sickle cell crises she has endured stands out
to her: “At 13, I had a stroke. It was a scary one because I
couldn’t move my left side of my body, but luckily I got all
my consciousness and movement back. For two years I was
[having] blood transfusions every four weeks so it didn’t
have to happen again.”

Because of her sickle cell, Leah has a bone condition that
meant she needed a hip replacement when she was 25 years old.
“Now I have a blue badge but I don’t look disabled. I have to
carry crutches in my car boot just in case my legs flare up –
it’s, like, a throbbing feeling. You might see me walk into a
building without my crutches and then get my crutches out the
car just to walk again. I find that I get stereotyped for
that.”

Leah says that sickle cell patients are subjected to
stereotypes, especially in the black community, but she says:
“I think people who live with sickle cell also play a role in
that: As sicklers we don’t like to talk about it out of fear
of what other people might think of us. It’s a vicious cycle
really.”

Upon telling people she has sickle cell, Leah says, she has
received ignorant comments such as “Eww”, “You’re sick”, and
“What is that?” But, she adds, “I am still confident and open
about talking about my condition as it remains unspoken
about.”

In an attempt to change this, Leah wrote a children’s

book called My Friend Jen: A Little Different,
which is based on her own experiences. “I always wanted to do
something around sickle cell that would make a change. That’s
how the book came [into] play. It’s to create awareness and
help little kids understand what sickle cell is. I just
wanted to show little kids who have my condition that they
can do what the other kids can do but just need a little
precaution.

“The feedback has been so moving. I’ll never forget this
little girl called Aaliyah, who has sickle cell as well; her
parent says she loved the book and she dressed up as the
character for World Book Day.”

For Rachel Jarvis, her day-to-day life is one of constant
pain. She says: “I get chronic pains – some days it’s light
but it’s always there and I feel tired a lot in the morning.
No matter how I sleep my muscles feel very tired and
weak.”

Jarvis, who was diagnosed with sickle cell at six months old,
has been in out of hospital for most of her life because of
her condition – so much so that it inspired her to drop out
of her psychology course at Sheffield and go into nursing at
City, University of London. “I am now studying nursing
because I have spent so much time as a patient and I have had
so many lovely and wonderful nurses, it really encouraged me
to do the same and care for others, especially those with
sickle cell,” she says.

It was last year that the 21-year-old experienced a
particularly scary sickle cell crisis. “I have experienced a
lot of crises but the worst one was when I went to visit my
friend in Brighton and the next day I [was] in chronic pain
on my way back to London. It was the absolute worst
experience. I was in Victoria station. I was begging people
to help me – no one came. I was in so much pain. I collapsed
and the staff working at the station eventually came to help.
My mum came and we went to the hospital. They told me I had a
collapsed lung.” It took Jarvis four weeks to recover.

“On my days off I just sleep, because I really need to take
it easy, but it can be so hard especially when I check
people’s Instagram pages and they are doing so many
activities: gym at 8am in the morning, and then they are
shopping, then they are out for lunch,” she says. “I wish I
could do all those things but I just remind myself not to be
so hard on myself and that. I have sickle cell.”

Over the summer of 2005, Jarvis started a
YouTube channel – where she vlogs and does beauty
tutorials – and started opening up about sickle cell and how
it affects her. “I wanted to tell my story on my terms, not
biological terms, and lots of people really understood.”
Despite being nervous about inviting people into the intimate
details of her life, she says the video was important because
explaining her condition can be very frustrating.

Jarvis also says that dating can be hard because of her
condition. “I was dating a guy and when I told him I have
sickle cell, the very next day I asked him if we were going
out for the drink he promised – he says, ‘No, of course we
are not. I can’t do this any more.’ That was really upsetting
and hard.”

Because sickle cell is an invisible condition people often
don’t take it seriously, Jarvis says. “People don’t believe
we are in pain all the time, but this is the reality of the
illness. I can be in a lot of pain and still be able to move
my phone, but I feel you have to act a certain way because
you don’t want to look too relaxed or people will think
you’re not in pain.”

Stefan Taylor tries his best to push through the pain in
order to keep living his life. He recalls one occasion where
he was in extreme pain, but was due to sit an exam. Stress
can exacerbate his condition.

“When I get stressed, I will have pain in my leg and on my
back. There was a particular day when I was stressed over an
exam. On the day, I woke up and I couldn’t move because the
pain was extremely bad and all I could think about was my
exam, and luckily it was in six hours’ time. I took
painkillers and went to my exam in chronic pain. It would be
too hard to explain to teachers – no one can really see your
pain – because it’s so random and it happens when you are
least expecting it.”

Taylor, 22, from east London, is in his second year of
university study accounting and finance. “In my first year of
uni, I lost my confidence because I was so tired because of
my condition,” he says. “I was doing double the work to get
the same grades as everyone else.”

Taylor, who was 10 when he found out he had sickle cell, says
he makes slight adjustments to make his day-to-day life a bit
easier, such as taking a bag with wheels on it to university
to avoid pressure on his back.

“Sometimes dating can be hard,” he says. “Some girls have
said to me, ‘You might not be around for a very long time’,
which makes it seem like I am going to die soon. Some girls
have said they don’t know what this means if we have children
[because it is an inherited condition] and ‘I don’t think
this is fair for my children to have the trait.’” Naturally
this hurts, he says, but “I just pick myself up and move on.”

Taylor now helps younger kids who have sickle cell on
hospital wards by offering them advice. “I was lonely growing
up with sickle cell. I didn’t know anyone who had it, and I
don’t want that for younger children. I want them to know
they have someone and support,” he says. In the summer he
helped Newham hospital put on an event about sickle cell with
300 people, which he is really proud of.

“There’s a lot of stigma around people with sickle cell: that
we are drug addicts, because we need a lot of morphine and
codeine for our pain.”

He says he has been made to feel this way while being treated
in hospital. “You are made to feel like a drug addict and
told to go home, or they think we are faking it. Sickle cell
has been neglected by the NHS. It’s disheartening. If you
have diabetes, you go to the hospital and receive the care
you need instantly – why can’t that be the same for us?”

Kehinde Salami found out he had sickle cell aged 26 while
studying at the University of Manchester. “I was having a
normal day at uni in my room; moments later I was
experiencing the most intense stomach pains. It felt like
someone was stabbing me repeatedly. I yelled for my flatmate,
who carried me – I think I weighed 80kg at the time – to the
medical centre. Luckily we were 10 minutes away. They wrongly
diagnosed me with cancer, then I got diagnosed again with
sickle cell.”

Salami says several members of his family have the condition.
His father, younger sister, and 5-year-old daughter have
sickle cell and he says his aunt died following sickle
cell-related health complications. “My dad didn’t want to
tell me when I was younger that I may possibly have sickle
cell because he didn’t want to hold me back,” Salami says. “I
look back at my childhood and there were so many times when I
felt fatigued, weak, and blacked out. I was made to feel
lazy. Need to train harder. I shouldn’t have suffered in that
way.”

After experiencing four back-to-back sickle cell crises,
Salami decided to set up the charity Sickle Kan. “We are empowering
people with the condition,” he says. “There are not many
people talking about it, especially black males. We are
partnered with the NHS and helping [to grow] black blood
donations.” He cofounded the company with Iman D-Fuller, a
22-year-old whose friend died from sickle cell complications
at a young age. Sickle Kan also has a hotline, and Salami and
D-Fuller take calls from patients around the world, advising
and comforting them.

Salami recalls one crisis that resulted in him losing vision
in one eye after a blood vessel burst. “My eye went blind
because of sickle cell. It was like a broken mirror in my eye
– it was just black, I thought I had an eyelash stuck to my
eye. That’s when I thought this is very serious, went to
hospital,” he says. “Explaining it was affecting my ability
to work, they told me to wait six weeks for my sight to
clear. Six weeks turned into two months, two months turned
into a year.” This happened two years ago, but it wasn’t
until June this year that Salami had corrective surgery,
which improved his sight drastically. “The whole thing was
scary and frustrating.”

Salami agrees counselling should be mandatory for sickle cell
patients. “Sickle cell can affect you emotionally as well as
physically. I had periods when I thought, What’s the point
in carrying on?
, and was just giving up.” He says his
daughter who has sickle cell gives him so much hope. “She is
doing well as she has been on medication since she was very
small. She is so full of life and, if anything, she is more
worried about me. She always reminds me to take my
medication. She is a little joy.”

Staying employed has been a challenge, Salami says. He says
he has been laid off twice because he has sickle cell, even
though on both occasions he informed his employer about his
condition from the start. “The first company that laid me
off, I had been working with them for over two years and I
was going through a period of a lot of pain. Instead of me
taking time off, I didn’t – I worked through it and I had
made myself so ill. I remember once I took time off to go on
holiday and they made silly comments like, ‘You have sickle
cell, why are you going on holiday?’, which doesn’t make any
sense.”

“It feels devastating,” he says. “My employer was being
unnecessarily hard on me – not because of my ability to work
but my condition. It’s horrible.” Because of his experiences,
Salami says, he is now reluctant to disclose his condition
when starting a new job.

CORRECTION

Oct. 26, 2017, at 11:16 AM

Sickle cell gets its name because the disorder causes red
blood cells to become sickle-shaped. A previous version of
this post described them as doughnut-shaped, which is how
regular blood cells look.


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