Discomfort, crisis and death. Words that nobody wants to associate with their Children. Unfortunately for those suffering with Sickle Cell Disease (SCD), this is their reality. Whilst the majority of people will not be able to identify what makes a child suffering with the blood diseasedifferent, being the older sister to two Sickle Cell Anaemic sisters, I am able to shed some much needed light on the subject.
My Story
I had a large family. There were 8 of us all together. Both of my parents and my 3 brothers all have the Sickle Cell trait and are carriers of the disease.
My oldest sister and I do not have the trait and so we are not carriers; a bitter-sweet result. However, 3 of my sisters had Sickle Cell Anaemia(SCA).
2 of my sisters have died due to this overlooked disease.
My younger sister, who was 5 at the time, was admitted into the hospital 4 times in January alone and having lost my 9 year old sister to the disease, every admission was difficult. I am all too aware of the pain that sufferers experience.
What is SCD
SCD is one of the most common of the hereditary blood disorders andis estimated to affect 1 in 10 people. Although people from European backgrounds can also be affected, it predominantly affects people of Middle Eastern, Indian, Mediterranean, Caribbean and African heritage.
In the UK it is most common amongst those of African and Caribbean background.
SCD affects the whole body. Sufferers ofSCD aremore likely to get infections due to the damaged cells. A severe attack, known as a Sickle Cell crisis, can cause excruciating pain and even death. Their immune systems are very weak and so sufferers of the disease must take medication twice a day for the rest of their lives as there is no cure.
Regrettably, I grew up not fully understanding the complexity of my sisters' condition and apparently neither do the majority of hospitals and GPs.
Sarah Mulenga, 21, suffered from SCA and become painfully ill at her home in Barking on January 9th 2011. After the ambulance was called, the care that she so obviously and desperately needed was not given.
"The coroner's verdict found the two trainee paramedics had refused to take her to hospital." the coroner's report added that although "Ms Mulenga's death was as a result of 'natural causes', it was contributed to by this neglect...but many Sickle Cell Anaemia patients have felt a similar lack of emergency within the NHS." This was an extremely tragic and easily avoidable case.
"If this disease purely affected white people, this would not be the case", says John James, a SC sufferer who was made to wait for hours during an excruciating crisis episode before receiving the drugs he needed from the hospital.
Unfortunately, this is not an isolated incident as many sufferers of the disease receive considerably poor care when they visit hospitals.
There is a lot of stigma surrounding sufferers of the disease as many need morphine to alleviate the pain they feel during a crisis. However, due the majority of sufferers being from ethnic backgrounds, it is argued that there is a culture of stereotyping due to the negative associations between Afro-Caribbean's and drug abuse. Many are made to wait for painfully prolonged periods of time before been given the drug because many nurses and doctors are not that knowledgeable about the disease and the severity of the pain.
Kehinde Salami- founder and director of Sicklekan- a SCD awareness group- suffered a life threatening crisis in September 2016 and was admitted to Kings College Hospital. Mr Kehinde said: "After 3 days I discharged myself as the care in hospital was terrible".
"I noticed that the condition was very rarely talked about and there was very little to no support to sufferers".
various other Sickle Cell awareness groups are out there. The Sickle Cell Society being one. Award-wining author Malorie Blackman recently teamed up with the society to help raise awareness.
Unfortunately, Sickle Cell is an almost invisible disease and so are the sufferers.
