SADaCC Co-Facilitating Launch of First SCD Support Group in South Africa (Nakita Laing, Ambroise Wonkam)

12 Jan 2018 - 10:30
SCD patients and Prof Ambroise Wonkam meeting the Hughes Family.

SADaCC in collaboration with the Genetic Counselling Department at the University of Cape Town recently hosted the Hughes family and their friends from the United States of America on the 13th and 14th of November 2017. The entourage included Mr. Hassan and Mrs. TaLana Hughes, their eldest daughter Hasana, son Hassan, daughter Tianha. Tianha was also accompanied by her friend India. Tianha is living with Sickle Cell Disease (SCD) and is a Child Ambassador of SCD in the United States. She promotes awareness of the disease where 1 in 13 babies born to people of African descent has SCD. TaLana is also an advocate for families affected by SCD and together with Tianha aim to foster a community-based network for people and their families who are affected. The “Make a wish” foundation in the USA sponsored the trip for Tianha and her family as Tianha’s wish was to visit Cape Town and meet other SCD patients and their families. Nakita, a Genetic Counsellor tasked with planning this visit under the supervision of Prof Wonkam put together a two-day schedule for the Hughes Family.

Nakita together with the Genetic Counsellors took this opportunity to bring together SCD patients and their families to launch a support group for SCD patients and their families in Cape Town. On the first day, Prof Wonkam opened the session with a presentation of ongoing SCD research in his group. This presentation was followed by the SCD patients and families then shared their experiences of living with SCD. The second day was held at the Red Cross Children’s hospital. The families of pediatric SCD patients were encouraged and motivated by meeting adult patients. While a formal support group is yet to be established, a Whatsapp group for consenting SCD patients and their families based in Cape Town was created as a result of these meetings.