Quick question. Will Sickle Cell ever get as much media awareness as Cancer does? Everyday I wake up and I wonder when this will happen?
Sickle cell is a gift and a curse. I was diagnosed with Sickle Cell at just 6 months old. I’ve learnt some hard life lessons; I conquered the world the best I could, with an unbeaten strength, the grace of God and the willingness to never give up on life because of it.
Some of you are probably thinking Sickle Cell? What is that? Sickle Cell anaemia is an inherited blood disorder where the red blood cells that carry oxygen around the body develop abnormally. The disorder mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin. In the UK, Sickle Cell disorder is mainly seen in African and Caribbean people. I get so emotional and upset when people ask me these questions, it’s even worse when a black person says it. I mean everyone knows what Cancer is? How is Sickle Cell any different to it? I mean don’t get me wrong, Cancer is very important and no one has to go through such horrible experience, but Sickle Cell is just as important as Cancer.
Why is it that more than 100 years after its discovery there’s still a lack of awareness ? Why do I always have to explain myself to people and explain what Sickle Cell is ? WHAT IS GOING ON ? It’s as if people don’t seem to care too much about it. Is it because it’s an ‘ethnic disorder’ that scientists don’t care about putting in the work to research it? To make matters even worse, why is it that I’m in A&E screaming in pain and a doctor comes and asks me
“What is Sickle Cell and what do they give you for painkillers ?”
WHAT!!!!! ARE YOU KIDDING ME? ARE YOU NOT A DOCTOR? SURELY YOU SHOULD KNOW HOW TO TREAT ME? WHAT’S THE PURPOSE OF YOUR JOB ROLE PLEASE? That’s like asking a Cancer patient
“Hey there, what is Cancer and what medication do you take for it?” Pathetic!!!!
And why don’t we have any solid spokespeople, notable ambassadors or high profile celebrities to support Sickle Cell? I mean you get people like Halle Berry, Jennifer Hudson and Lady Gaga standing up to Cancer, but there’s no one for Sickle Cell. Just like one of my ‘Sickle Warrior sisters’ said in a conversation the other day:
“Why is it raising money for Cancer and other life threatening illnesses gets more awareness and funding whilst Sickle Cell doesn’t?” I want to know why people are encouraged to run in aid of heart disease and we can’t get a budget for our own ‘Sickle cell awareness month’”
And she is absolutely right! I want to know why in the haematology department they spend thousands of pounds into researching white stem cells, but not the red blood cells? I support Cancer Research and the movement it’s become but I strongly believe Sickle Cell should get the same research and media coverage. Sickle Cell is a very serious disorder it is also life threatening just like Cancer. I have friends who have hearing problems today because of their Sickle cell! Some of my friends are blind. Some of them are PHYSICALLY PARALYSED! I myself experienced near death experiences from collapsing, not breathing and being in intensive care for months. So can anybody tell me that this isn’t an issue that needs more awareness, especially for those living with it, unbeknownst to them ? Now tell me this can’t get any media coverage?
Everyday when I wake up to cancer research advertisements on TV and I jump on the train I see banners, posters and flyers about Cancer. Not a thing about Sickle Cell. The fact that no one is checking for Sickle Cell and the awareness is incredibly low and not much information on any research and the stigma surrounding the illness is getting worse, is incredibly worrying. The only way Sickle Cell can get enough media coverage is if we have a spokesperson and high profile celebrities standing up for it. What we have are smaller community based organisations working with limited funds and menial resources doing the best they can to advocate and operate the best way they know how, And that is why I want to thank the whole Sickle Society team in Harlesden for always trying their best.
And another major problem – I strongly believe the reason why we’re not getting enough awareness we should be getting is because of black people, YES I SAID IT BLACK PEOPLE. In terms of any illness we seem to have some sort of stigma attached to it, especially Africans. They believe having Sickle Cell is a taboo and it’s a shameful illness and some even believe that we’re possessed by an evil spirit. I remember when my father hated me telling people I have Sickle Cell, but I’ve always been open about it. Bullying is another reason why some people with Sickle Cell don’t like talking about it, I mean I don’t blame them I myself have been bullied because of it and have also been saved onto a person contact list as a “Sickler” *totally broke my heart*. But if we was to put all this a side together we can fight Sickle Cell, if we all educate and push everyone to educate themselves on Sickle cell and raise awareness and perhaps get celebrities on board, and those suffering with the disorder will then perhaps open up and share their experiences.