Living with a secret: Dean 20 from Mill Hill, London opens up for the first time about having Sickle Cell Anaemia
Sitting in A&E for over 12 hours in crippling pain, the 5mls of morphine administered in the ambulance is not even close to helping the pain subside, but despite desperate pleas for his usual dosage of 20mls this falls on deaf ears and he is left waiting at hospital in agony until a doctor is available. Hours later he lies in a hospital bed, only visited occasionally by medical staff to take a routine blood sample, or to take his temperature or blood pressure- the pain has not gone.
Hours and hours pass, as he sits and waits, time cruelly doesn’t stand still. The feeling of isolation and boredom sets in. Outside people are getting on with life. Unable to get comfortable he lies there, the pain has not gone. Rescheduling and reorganising life from his hospital bed, sending apologetic texts to friends for cancelled last-minute plans with no explanation, he misses an important exam or a shift at work, living with this illness in secret is beginning to take its toll.
Dean has Sickle cell anaemia, a blood disease
most common in the UK amongst people of African and Caribbean origin, caused by abnormal red blood cells; stiff and crescent-shaped (as opposed to flexible and disc-shaped). The shape of the blood cells makes it difficult for them to move easily around the body often causing them to block blood vessels which can result in tissue and organ damage as well as episodes of severe pain known as a Sickle Cell Crisis.
The relentless pain often described by sufferers as an aching, throbbing, sharp, shooting, or burning pain, can spread quickly across the entire body, or be concentrated in one muscle or limb.
“When I have a crisis in my legs sometimes I have been unable to walk and have been carried out from my bed on an ambulance stretcher”, says Dean. Other times the pain has left him unable to talk. Never knowing how long he will have to endure, ,only adds to the anguish, as a crisis can last anything from a few hours to several days, to even months at a time.
I asked Dean to keep a two-week diary, logging his symptoms.
A crisis can be physically taxing but mentally draining too. Dean says, “Emotionally I used to be able to manage but of late as my crises have been harder to manage at home and I am being hospitalised for them more regularly, it has definitely affected my life and been much more disruptive to my normal routine, which has got me down.”
Understandably with the added pressure of hiding his illness, Dean is coping with much more than the average 20- year old. In the past he has only shared his condition with others on what he calls ‘a need to know basis’ and admits that he even has a childhood friend he never told.
An incident at college a few years ago still fills Dean with dread when he recalls the fear of being rumbled by a fellow student when his medication fell out of his backpack and she picked it up. She enquired what he used it for, but when Dean froze she revealed that she had sickle cell anaemia and infact used the same medication. For a moment they shared a glance that confirmed the depth of their mutual understanding without Dean even saying a word. Despite his relief of not being exposed that incident was not enough to encourage Dean to talk about his blood disease.
Misconceptions about his condition have added to Dean’s reluctance to open up, with one friend once asking if the disease was contagious. Sufferers are born with sickle cell anaemia, inheriting it genetically from their parents. To get sickle cell anaemia you have to inherit the defective gene from both parents. If both parents have the sickle cell gene known as the trait, there is a 1 in 4 chance their child will have sickle cell anaemia.
Dean’s parents were unaware they both had the sickle cell gene before his older brother was born. Prior to antenatal screening it was a common occurrence that parents with the gene were unaware they had it because unlike with sickle cell anaemia, carriers of the gene have no symptoms. Dean believes that his parents feel guilty but admits that they have never had ‘that’ conversation. “I know it kills them to see their children in pain!” he says.
As well as managing his disorder Dean’s priority has long been to keep his blood disease a secret, for fear he will be treated differently.
“I keep it a secret and I don’t share my illness with anyone, this is my first time openly talking about my blood disease in such a public way”, says Dean.
Comfort Ndive, Regional Care Advisor at Sickle Cell Society identifies with Dean’s story, and says, “Because of the stigma associated with sickle cell most patients, and even parents with children with the condition, do not want to talk about it or to inform close relations that their child has sickle cell.”
Dean does not blame his parents at all for his condition but is adamant that because of his own experience of how debilitating and life-altering his blood disease has been for him he would never consider having children with someone who had sickle cell anaemia or the gene. He says, “There is no way I would get with anyone if there was any chance that the child could have sickle cell. Even if it was as little as a 10% or even a 5% chance!”
For more information or advice visit www.sicklesociety.org or www.nhs.uk
Celebrities that have revealed they have sickle cell: Actor Larenz Tate, Jazz musician Miles Davis, T-Boz Watkins from RnB group TLC, Hip Hop artist Prodigy- Mob Deep.