AS part of its 21st annual Sickle Cell Awareness Week activities from November 9-15, the Sickle Cell Support Club of Jamaica (SCSCJ) on November 15 hosted a Sickle Cell Health and Wellness Symposium at the Knutsford Court Hotel in Kingston. The week-long activities were held under the theme: “Holistic Approaches to Managing Sickle Cell Disease”.

The SCSCJ is a voluntary service organisation that is committed to supporting families affected by sickle cell disease (SCD), a genetic condition which affects one in every 150 children born in Jamaica.

The symposium, which was free to the public, highlighted both medical and complementary approaches to the treatment of SCD.

Dr Nadine Morrison-Levy, paediatrician at the Sickle Cell Unit (SCU), stressed the need for parents to be vigilant and closely monitor their children so that any problems can be detected early. Some of the common paediatric symptoms she described included painful swelling of the fingers and toes called dactylitis, jaundice, painful crises, acute chest syndrome, and strokes, which occur in approximately seven per cent of children with SS disease, the most severe form of SCD.

Dr Komal Bhatt, adult doctor at the SCU, urged adults to make regular visits to the SCU to monitor their condition as patients are living longer and may develop problems later in life, such as kidney disease, gallstones, avascular necrosis of the hip, and sickle retinopathy, which can lead to loss of vision.

Meanwhile, Dr Tamu Davidson, who brought greetings to the gathering on behalf of Health Minister Dr Fenton Ferguson, advised that hydroxyurea will be added to the National Health Fund’s schedule of subsidised medication to assist SCD patients in the new financial year.

A naturopathic doctor from the United States of America, Dr Charlie Ware, spoke about the use of acupuncture and herbal supplements to manage painful crises and the importance of a healthy diet.

WHAT TO AVOID

Individuals with SCD should avoid sugary foods and beverages as excess sugar increases inflammation in the body. Dr Ware recommended coconut water, eating lots of fresh fruits and vegetables, and consumption of yams, cassava and cassava products like bammy, which are high in thiocyanate, a compound shown to have a protective effect on SCD patients.

A mother, Tamika Moseley, shared her experience about her son with SCD in Dallas, whose health improved through the use of herbal and nutritional supplementation, including EvenFlo, a herbal product developed by Dr Ware.

Director of the Sickle Cell Trust, Professor Graham Serjeant spoke to the issue of prevention as more than 400,000 Jamaicans are at risk of having a child with SCD. The Trust’s newborn screening lab in Mandeville has expanded screening of babies born in hospitals along the south coast and at the Cornwall Regional Hospital. Professor Serjeant’s team is also conducting a study to determine if screening and educating teenagers will influence their choice of partner and the likelihood of having a child with sickle cell disease.

Associate Clinical Psychologist Alicia Lewis addressed the issues of low self-esteem, anxiety and depression often experienced by sickle cell patients, while Camille Daley, co-founder and director of the SCSCJ, shared coping strategies for an empowered life.

Participants were very engaged and had many questions for presenters. The SCSCJ’s next meeting will be Saturday, December 13. People who are interested can check the club’s Facebook page for venue and time details. The SCSCJ is located at the Sickle Cell Unit, University of the West Indies, Mona campus and membership is open to the general public. Reach them at 927-0276 or via Facebook. Donations can be made to their NCB account # 404042041 or their JMMB account # 1240176.