CVSS advocates for proper data on lupus

KIM Mair, chair of the Council of Voluntary Social Services (CVSS) — the coordinating body for non-governmental organisations (NGOs) serving in Jamaica — said that technology and data should be used to develop interventions to aid vulnerable groups, including those affected by lupus.

Mair made the observation while addressing the launch of Lupus Awareness Month on October 3 under the theme ‘LevelUP’, which was organised by the Lupus Foundation of Jamaica (LFJ).

“We cannot become complacent but instead, activate more channels, capture more data, expand interaction across the globe, and adopt more innovative ways, to serve our lupus community using data,” she said.

The CVSS chair commended the recommendation by the Lupus Foundation to establish a registry as she said this will accurately account for those who pass from the disease.

“Too many cases are classified as dying from infections, renal failure or cardiovascular events and the true culprit of lupus is not named,” she pointed out.

The capturing and reporting of data serve to accurately attribute the loss to life to lupus, and the analysis of data supports lobbying for resources for research and treatment.

Mair urged collaboration with the LFJ for the formulation of policies to reduce imbalances in the health sector and social inequality among social groups. She also underscored the importance of volunteering with the foundation to ensure that no Jamaican impacted by lupus is left behind.

“Offer your time and talent to the Lupus Foundation of Jamaica to help improve the lives of lupus fighters and spread awareness of this cruel disease. Participate to help those impacted by lupus to be proactive, and empower them with the knowledge so that they can recover better,” she said.

“Let us give, while still advocating and lobby for the Government to provide a standard of health care to help our citizens not just to survive but enjoy a quality life by delivering aid and services that are accessible and cost-effective,” she added.

During the month of October, the LFJ will be having various activities to educate persons about the disease. These include: a virtual programme entitled, ‘Ask the Experts Live Q&A’ with special guest Dr Susan Manzi, a medical expert and immediate past chair of the Lupus Foundation of America; campus awareness outreach programmes across tertiary institutions; a series of features on lupus warriors and ‘Purple Fridays’ where everyone is encouraged to wear purple on that day in support of those affected by the disease.

Jamaica has one of the highest rates of lupus worldwide, with women and caregivers mostly affected. An estimated 6,000 people are believed to be affected by lupus in Jamaica. Eighty per cent are diagnosed between the ages of 15 – 44, with 22 years as the average age to receive a diagnosis of lupus. The disease is considered an important underlying cause of premature deaths, particularly among young people.

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