SVG Sickle Cell Association hosts symposium

To mark September being sickle cell awareness month, the SVG Sickle Cell Association hosted a symposium to educate the public and provide support for those suffering from the disease.

The symposium, which took place on Saturday, September 6, 2014, saw feature addresses delivered by two medical professionals from the Medical University of South Caroline (MUSC), as well as presentations from professionals operating locally.{{more}}

In her address, president of the Sickle Cell Association Ann Marie Millington said that the symposium was part of the organization’s mandate to provide “support for patients and families in times of crises.”

Millington said that the organisation has been disseminating information about Sickle Cell Disease (SCD) through the media and by making visits to schools throughout the island.

She encouraged members of the public to get tested for the disease, which is inherited from both parents.

“Know your sickle status and prevent the transmission of the gene,” she urged.

Vincentian born Dr Shelly-Ann Williams, a paediatrics fellow from the MUSC, in her address, spoke of new approaches to newborn screening for the disease in St Vincent and the Grenadines.

Williams also outlined a one-year pilot programme that she is spearheading, which will screen newborn babies for sickle-cell disease – in the hopes that it will lead to universal (mandatory) screening for newborns being introduced locally.

“The goal is to identify infants at risk and in need of further testing,” she explained.

Williams pointed out that in the United States, it is estimated that universal screening has “saved or improved” the lives of approximately 12,000 infants each year.

In the region, Guadeloupe, St Lucia and Tobago have universal newborn screening, with Grenada just having implemented it.

Dr Julie Kanter, assistant professor in the paediatric department at MUSC, in her address, spoke about how sickle-cell disease is passed on, and the management of treatment throughout the life span.

“Sickle-cell disease is a complex multi-symptom illness rather than just a simple disorder of oddly-shaped cells,” explained Kanter.

She said that the disease affects almost every organ system in the body, and that in the 100 years since the disease was first described in medical journals, only one drug has been developed to treat symptoms.

Kanter further said that in the decade that she has been involved with research and treatment of the disease, many persons have questioned why she chose that path, seeing as she is Caucasian and the disease mostly affects non-Caucasians.

“I look at them all like they’re crazy,” she said. “We are all people, and these people [SCD patients] need help!”

Also giving presentations were Dr L Miguel, medical officer (internal medicine) at the Milton Cato Memorial Hospital (MCMH); Dr Anoushka Horne-Cupid, medical officer (paediatrics) at the MCMH; and Dr Jozelle Miller, health psychologist.

Dr Miguel gave an overview of what the disease is, how it is inherited and who is most prone to it. She also spoke of the incidence of sickle cell in patients in SVG during the period of January 2009 to April 2014, citing a total of 626 reported cases.

Dr Horne-Cupid discussed the complications that may arise when SCD patients go through pregnancy – referring to risk to both mother and baby. She also emphasised the importance of seeking specific medical advice during conception, during labour and in postpartum care.

During Dr Miller’s presentation, she spoke about the psychological effects of the disease on patients who “feel like they want to give up on life” when they experience flare-ups or crises.

“We need to understand… disease screening and counselling is vital.”(JSV)