Being a young person in South Africa isn’t always easy in the new found democracy.  With high levels of unemployment, crime and poverty, it is not surprising that some young people become disillusioned, especially in the previously disadvantaged areas known as townships.

Growing up with haemophilia can present another challenge for these young people.  The necessary social and healthcare services are not always accessible, access to financial resources are rare as food on the table is a priority, and support networks and haemophilia awareness are virtually non-existent.

It is with this background that Anne-Louise Cruickshank, a South African nurse, created the ROCK (Reach Out Centre for Kids) programme.  Aimed at young people with haemophilia, ROCK is a support network run by people with haemophilia, for people with haemophilia.  It focuses on young people who have shown the potential to become leaders in their communities.  By honing these leadership skills, the programme seeks to create a peer network where young people have the confidence and drive to raise awareness of haemophilia in their local communities as well as provide practical support such as advising on home treatment.

NNHF was so impressed with Anne-Louise’s efforts to mobilise the haemophilia community in South Africa, that in 2010 she was awarded the NNHF Community Award.  Part of this grant of CHF 16,000 enabled Anne-Louise to expand the ROCK network to more areas in South Africa.

NNHF was delighted to meet with Anne-Louise on a recent trip to South Africa, where she updated us on her latest activities – a ROCK camp for 27 young men with haemophilia.  Aged between 14 and 30 and all from the Western Cape, some participants travelled 400km to attend the camp.   Describing how participants were selected, Anne-Louise explains, “This is the age group in which we have had the most issues such as dropping out of school, getting involved in illegal activities and generally not coping with day to day haemophilia and life issues”

The programme for the latest camp was developed by Tony Roberts who is a person with severe Haemophilia, a registered educational psychologist and a member of the WFH Psychosocial committee.  The programme entailed 3 days of fun and learning using an Action-Learning method of facilitation.  Workshops at the camp covered the practicalities and emotional impact of living with haemophilia such as belonging, home therapy and physiotherapy sessions.  In addition, other issues that directly affect the lives of young people living in South Africa were included, such as educational sessions on HIV, drugs, teenage pregnancy and career advice.

Anne-Louise feels these camps will have an impact that goes beyond learning to live with haemophilia, “I think the boys realised they are just like every other person in the community and haemophilia is only a small part of their lives.  I hope they see the need to go and ‘live a little’ and take control of their lives.”

“I have learnt a lot, not only about haemophilia but that there are other people with the same as I have and they have made a difference in their lives, so it gives me the confidence to do the same.”

“I learnt that there is more to life than just haemophilia.  It’s just an obstacle that needs to be overcome like any other, by taking care and living healthily.”

In addition to this ROCK camp, the grant has also supported two more camps in Gauteng and KwaZuluNatal, as well as five support meetings for carriers of haemophilia and women with bleeding disorders.

Do you know someone like Anne-Louise, who has shown outstanding voluntary engagement with the haemophilia community in a developing country?  Nominate them now for the 2012 Community Award.  Deadline for nominations 20th January 2012.

Watch our short film about the awards.