For families affected by sickle cell and stroke
Sickle cell anaemia is a genetic blood disorder where red blood cells cannot move through the blood easily. This can lead to symptoms such as extreme pain, kidney failure, serious infections and organ damage.
Sickle cell can also cause major strokes in children as young as two years old. The chance of having a stroke is one in four, and families affected by sickle cell have to live with this constant threat.
Young people with sickle cell are particularly vulnerable to anxiety and depression, and this can lead to risky behaviour such as refusing to take their medication or deliberating avoiding blood transfusion sessions. This means their condition becomes worse.
That is why Roald Dahl's Marvellous Children's Charity is working in partnership with Sickle Cell and Young Stroke Survivors to run a new cognitive behavioural therapy programme for families affected by sickle cell anaemia and childhood stroke.
The charity will involve a mixture of 8 families based in South London, where there is a high prevalence of sickle cell disease and a large number of children on blood transfusion. It will target families with teenages with sickle cell and stroke.
The programme will take place over 8 monthly sessions with 2 families together, to give them the benefit of sharing their experiences. The team will include three therapists including a cognitive behavioural therapist, an exercise therapist and family therapist.
All the therapists will work together in each session, providing practical exercises, role play and explore some relaxation techniques. Cognitive behavioural therapy has been chosen because it has been proven to have a high impact in the short term. Family therapy looks specifically at improving the communication of the family. Exercise therapy will show how movement and relaxation will provide another way of coping.
The project will end with a family day, and follow up sessions after one and four months.