Sickle cell disease is a name of inherited conditions that affect red blood cells. The most common type is called sickle cell anemia. Sickle cell disease mainly affects people of African, Caribbean, Middle eastern, Eastern Mediterranean, and Asian origin. In the UK it’s particularly common with people with an African or Caribbean family back ground.
Sickling occurs when the red blood cells become sickle or crescent moon shaped and sticky , clumping together restricting and blocking blood vessels causing extreme pain and in most cases organ failure and in extreme causes death. Currently there are approximately 16,000 people that have the full blown sickle cell condition in the UK with an alarming 3 quarters of that figure residing in London. There are also approximately 250,000 carriers of the sickle cell gene which can possibly pass on the full condition to their children
Sickle cell disease is also the fastest growing genetically inherited condition in the UK affecting over 1 in 2,000 births and over 17,000 adults are living with the condition in the UK knowingly.
These figures don’t cater for those who don’t know that they have the full blown disease or are carriers of the trait itself, which can lead to the illness being passed on to their children unknowingly.
Despite this there is a clear lack of information and awareness about sickle cell within the local, wider, and global community which often means due to ignorance many sickle cell patients are suffering and in worse cases dying in silence continuing the cycle of ignorance and suffering.
Making a difference
We the Sicklekan community aim to spread awareness through various avenues, firstly by spreading awareness not from the point of view of medical professionals, but through first-hand experience of Patients.
We believe that by making people aware and giving them the correct tools to aid themselves or others in need of assistance, this would mean a decrease in the amount of Sickle cell patients feeing neglected and improperly cared for. With the right funding and support we can reach and provide information and support to members of the community, schools, business and other organisations try and address the grey areas surrounding Sickle cell implementing measures to rectify this.
Sicklekan Cic will:
- Promote awareness of Sickle Cell from the ‘Patients’ perspective
- Raise awareness within those communities at risk of Sickle Cell
- Educate Schools, health based and other professionals on what Sickle Cell is, the impact on individuals, families and communities and their role in supporting patients
- Provide a platform for Sickle Cell sufferers to have a ‘voice’
- Run Local blood screening and donation drives to increase the number of blood donors to be available for people in need of transfusions
- Create Workshops/Community events to better support families that have been impacted by the condition