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Living Well With Sickle Cell

Support association to host biggest event to date

By ALESHA CADET

Tribune Features Reporter

acadet@tribunemedia.net

With thousands of Bahamians estimated to be affected by sickle cell disease, the local support association is gearing up to host its biggest education event to date.

In an effort to offer community support in a meaningful way, the Bahamas Sickle Cell Association (BSCA) announced it will kick off its 2018 inaugural event, free of charge, this Saturday at the Baha Mar Convention Centre.

Under the theme "Living Well With Sickle Cell", the workshop, which runs from 9am to 12noon, will focus both on adults and children living with the disease.

Organisers said the aim is to provide patients with much needed and useful information on whole-life treatment and provide recommendations for developing a comprehensive national health and an education platform in order to bring nationwide attention to diagnosis and treatment of the disease.

At the same time, they hope to assist the BSCA with identifying key target audiences for development of a national sickle cell patient registry.

According to the association, the last poll conducted was in 1987. It revealed that one in 100 Bahamians suffer from the disease and one in 400 has the sickle cell trait.

Throughout the workshop, BSCA facilitators will guide participants, who will be separated into two groups, as they follow along with the provided material. The youth group will be for those age five to 15; while the second group will be for persons age 16 and over. Breakfast is also included.

At the workshop, technical assistance will be provided as needed from on-site by doctors such as Dr Sinquee-Brown, Dr Theodore Turnquest, Dr Shereka Carroll and Dr Ashani Knowles.

Founded in 1981 by Dr Patrick Roberts, the BSCA was formed to increase public education and awareness of sickle cell disease in the Bahamas, and moreover, to lessen the effects of its impact on those with the disease. The Association was reinstated just three years ago. Sonya L Longley now serves as president.

"This is the first workshop of this magnitude that we are hosting. In the past we have held forums open to the public as a part of our platform for raising public awareness of this disease. At the close of last year, the board of directors of the BSCA wanted to give back in a meaningful way for all of the support that we have received since our revival in 2014. The support that we have garnered over the years was overwhelming. It has emboldened us and made us resolute in our commitment to raise awareness about the impact of sickle cell disease and to become the national voice for education and advocacy for persons living with the disease," said Ms Longley.

She said the upcoming workshop will also provide what they call a self-care tool kit, which is a collection of materials used as a helpful tool to assist sickle cell disease "warriors" with managing their health and keeping track of important information regarding their condition.

"It has multiple uses and the tool kit will also help with communication between the many health providers and service providers that are involved with patient care. We will also distribute vital care packages to the participants, which includes a bag for convenience, heating pad, Pedialyte, a thermometer, blanket, water bottle, notebook and pen," said Ms Longley.

Another item offered at the event will be the "In Case Of Emergency" (ICE) card - a wallet-sized card similar to a driver's licence which enables first responders to understand that a 20-minute protocol for patients with sickle cell disease is needed - a protocol to establish pain levels, oxygenate, administer fluids/hydrate, administer pain medication (intravenous), and call a haematologist.

"Many doctors are not familiar with sickle cell disease, therefore it is very important for warriors to take an active role in managing their own care. To make important decisions persons need to know about sickle cell disease, understand treatment options, and then make the best possible choices for their health," said Ms Longley.

"Using the tools provided in the tool kit will help to monitor and manage the disease. Also, putting together a care notebook or binder that can be taken wherever and whenever, for example doctor's appointments, emergency room visits, vacation, and the workplace as needed; this will help organise all of the sickle cell disease related medical information in one place so that warriors can keep track of information over time," said Ms Longley.

The term sickle cell disease describes a group of inherited red blood cell disorders. People with sickle cell disease have abnormal haemoglobin, called haemoglobin S or sickle haemoglobin, in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body.

Normally, red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anaemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body. There's no cure for most people with sickle cell anemia, but treatments can relieve pain and help prevent problems associated with the disease.

For more information, readers are encouraged to please e-mail at info@bahamassicklecell.org or call 436-7130 and 427-4849.

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