Help wanted for struggling sickle cell support group

BY DONNA HUSSEY-WHYTE Sunday Observer reporter

Sunday, March 03, 2013

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THE Sickle Cell Support Club of Jamaica (SCSCJ) is in dire need of financial support and manpower to effectively serve the approximate 260,000 persons in Jamaica who are carriers of the sickle cell trait, along with their families.

"We have had great difficulties raising funds to meet our day-to-day operating costs," said Morette Wright, one of the two founders of the club.

Specifically, she said, the support group needs money to pay a stipend to its part-time administrative assistant, telephone charges, stationery, printing educational brochures and maintaining its limited outreach fund for needy patients.

The SCSCJ is a non-profit, voluntary organisation established in October 1992 by Wright and Camille Daley, both of whom have sickle cell disease, to help those with the disease and their families.

Wright said their recurring operational cost is $720,000 per year to cover administrative expenses, this inludes office expenses and patient outreach to assist with medical expenses, X-rays, blood test, other medical procedures, prescriptions, and bus fare.

They are also currently in need of funding to assist with publication of educational material, particularly the Teachers' Guide for Sickle Cell Disease and Get the Facts on Sickle Cell Disease. This could cost between $150,000 - $200,000 for the year, dependent on the number of copies.

Wright said their financial situation has been worsened by the current national economic crisis.

"In addition, the club has not been able to retain a steady executive committee as many persons are not interested in being identified as having sickle cell disease because of the stigma attached and the fears of discrimination on the job market, etc," she said.

"Very few parents have the time or energy to commit to the club, as caring for a child with the illness can be very demanding. And we have not been able to attract persons who have no personal interest in, or connection to the disease to serve the organisation. These two major constraints have severely limited our ability to achieve our stated goals."

Wright said membership is open to all interested persons and one does not have to have a sickle cell disorder to be a part of the group.

"Our mission is to provide social and emotional support to patients and their families through a vibrant and viable organisation," she explained. "We also seek to heighten public awareness of sickle cell disorders and create an enabling environment within which individuals with sickle cell disease can flourish and realise their true potential."

Sickle cell disease (SCD) is said to be the most common genetic disorder in the world affecting persons in Africa, Asia, the Middle East, the Mediterranean region, Central, South and North America, and the Caribbean.

Researchers have theorised that the sickle cell trait resulted from a natural mutation in the body's fight against malaria, as the disease is very prevalent in all regions of the world with a long history of malaria.

The support group is working hard to dispel the many prevailing myths and misconceptions which surround the illness.

Some of these include the belief that sickle cell patients do not grow to adulthood, that sickle cell disease patients are mentally challenged, and that sickle cell is a communicable disease.

The other objectives of the club, Wright explained, are to act as a public advocate on behalf of individuals affected by sickle cell disease; to foster and support the personal development and self-actualisation of sickle cell patients, especially those who are poor, who have dropped out of school as a result of their disease and need remedial education and skills training; and to establish links and exchange information, ideas and strategies with regional and international sickle cell organisations.

Since its establishment in 1992, the SCSCJ has achieved a number of milestones.

In 1993 it lobbied the Ministry of Health to start neo-natal screening of all babies islandwide, as early detection is critical to the treatment of the disease.

"As a result of our lobby efforts, the National Cord-blood Screening Programme restarted on a pilot basis at Victoria Jubilee Hospital in January 1996," Wright explained.

"Since then, the programme has been expanded to include cord-blood testing of all babies born at the University Hospital of the West Indies and the Spanish Town Hospital. The programme is now screening approximately 40 per cent of all children born in the island, but has not been expanded to all parishes as the Government has said they are unable to fund an expansion," she said.

Other achievements include the staging of the annual sickle cell awareness week of activities; establishing a remedial education programme for patients who have fallen behind or dropped out of school due to prolonged and repeated bouts of illness; helping to establish a new branch of the SCSCJ in St Ann in 2002; and the establishing of a sickle cell hip-replacement fund in 2007.

"Many patients urgently need this surgery but cannot afford it," Wright explained. "The cost per surgery is approximately $350,000."

Today, however, the fund only has $20,000.

A sickle cell account has been set up at the Blood Bank to help to meet the needs of patients who require blood transfusions when hospitalised, but this fund, like that for the hip-replacements, has been depleted and is badly in need of more donations to revive it, Wright said.

Undaunted, the group has pressed on with other ventures incuding its sickle cell sweater drive, which was launched in 2007. Sickle cell patients tend to have painful crises that are triggered by the cold and rain and must keep warm at all times.

"This drive seeks to help sickle cell patients who get sick in the cold and rainy months because they are unable to afford a sweater to keep warm," the founder said.

Sweaters have been collected locally and by colleagues in England and are donated to patients through the SCSCJ and the social worker at the Sickle Cell Unit. Donations of second-hand sweaters and jackets in good condition are welcome, Wright said as she pleaded for more national support for the group's efforts.

"All are invited to come to any of our meetings held on the second Saturday of every other month at Merle Grove High School, 77 Constant Spring Road, Kingston 10, at 3:30 pm, or contact our office at the Sickle Cell Unit, University of the West Indies, Mona Campus," she said. "The next meeting will be held in March (9)."




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