Thanks to Jack Petchey for funding our SCYSS Club. - Jack Petchey supports SCYSS Club
Sickle cell & Young Stroke Survivors is being supported by - Genetic Disorders UK supports SCYSS in 2013
Health Conditions in Schools alliance Currently children who suffered from sickle cell and are identified as being at risk of strokes in school may not be eligible for statements. Extra care may need to be taken by school staff to identify telling signs or causes for concern when a child is in th - Health Conditions in School Alliance
Register for our June outing Register for our May outing Past Events to be repeated - Upcoming Events
Our charity has been run by Volunteers from the very beginning and today they are still at the heart of running the charity. Anyone can volunteer, we value your expertise and zeal to help put laughter and joy on the faces of our children and young people and in creating awareness in our commun - Volunteers
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.
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.
- 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.