• Who are we?

    Started in June 2005, Sickle Cell & Young Stroke Survivors (SCYSS) is a registered charity – 1120902, that supports in a holistic way children, young people and their families affected by sickle cell anaemia and childhood stroke.

    It started as a support group by a parent who had to manoeuvre the lonely Stroke maze when her 6-year-old child had a second stroke as a result of Sickle cell anaemia. As the need grew, in September 2007 it became a registered charity. The support we provide is holistic and is for children, young people and their siblings.

     Our Aims

    The aim of the charity is to support to children, young people and their families affected by sickle cell disorders and childhood stroke in a holistic way.

    Our services and activities:

    1.    SCYSS’s Young People’s Club:

    • Saturday Cub for 0 – 12 Year old includes
    • Youth Club for 13 – 18 year old
    • Summer Playscheme    See 2011 Playscheme album

    2.     Family Service and Drop in

    • Information, Advice & Advocacy
    • Support Group
    • Young Carers Support

    3.     Lobbying for change

    • Creating awareness on sickle cell & childhood Stroke
    • Lobbying for change of policy at local, national government levels and Parliament.

    4.   Outreach in the community

    •  
    • Attending Networking Events

     

    • Sickle cell Information Day
    • Quarterly newsletter
    • Outreach in the community through talks, attending and organising events, visiting schools, workplace and community groups.

     

    5.    Training

    • Sickle cell Training – Knowing the basic

    6.    Sickle Cell In Africa Project

    • CarolDaniel Sickle Cell centre – Nigeria

    For more details, contact us.

    What is Sickle cell Anaemia?

    Sickle cell anaemia is a genetic blood disorder. Blood cells are shaped like a moon crescent, that does not enable the red blood cell to move easily through the blood vessels.

    The sickled cells are stiff and sticky and tend to form clumps and gets stuck in the blood vessel.

    This can cause excruciating pain, serious infections, kidney failure, stroke in children and other severe complications. and organ damage such as chest crises, kids causing blockages in the blood vessels that lead to the limbs and organs.

    Since inception, we have been raising awareness of stroke in children caused by sickle cell anaemia. This is one of the complications that can occur between the ages of 2 – 16 years and can have devastating effects on the family.

    Many families who have children affected by childhood stroke do not know where to get support, seek advice or get essential information.