Tag: thalassemia

Atoll Challenge paddles 165 kilometers, raises MVR 1 million for Thalassemia

A six-man kayak team has paddled 165 kilometers around Lhaviyani Atoll and raised over MVR 1 million (US$ 64, 840) for the Maldives Thalassemia Society.

The four-day “Atoll Challenge” visited all four inhabited islands and five resorts in the northern atoll to raise awareness on the common blood disorder and raise funds to buy 50 desferal pumps – a device that removes excess iron from Thalassemia patients’ blood.

The common genetic disorder causes severe anemia and patients require life long blood transfusions. The frequent transfusions cause iron-build up in the blood.

The Maldives has the highest incidence of Thalassemia in the world with 18 percent of the population carrying the recessive gene for the crippling disorder. One in every 120 births in the country is a Thalassemia patient.

Minister of Health Dr Mariyam Shakeela welcomed the kayakers back to Kuredhu Resort on May 8. Seaplane company Trans Maldivian Airways (TMA) was the largest donator to the challenge at US$ 10,000.

The Thalassemia Society has identified insufficient screening services, shortage of desferal pumps, lack of treatment in Malé and the atolls, and lack of a standard protocol for treatment of patients as the biggest challenges patients face.

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Thalassemia Society calls for equal and improved care

The Maldives Thalassemia Society has called on the government to provide medical care to all patients with the genetic blood disorder without discrimination and upgrade facilities at the Maldivian Blood Services (MCS)

The Maldives has the highest concentration of carriers for the disorder at 18 percent, and over 500 registered patients. Thalassemia causes severe anemia and requires life long blood transfusions and treatment.

Speaking at a ceremony at Nasandhura Palace Hotel last night, Abdul Muizz Hassan of the Thalassemia Society said individuals with the disorder living in the islands do not have access to proper treatment, while medical care facilities in Malé are run down and dilapidated.

“The building we go to seek treatment from is dilapidated, run down. We have to bear a lot of difficulties to seek treatment there. I plead with you, [we would like] for [the government] to provide us with treatment at a new building, so that we can go home satisfied,” he said.

Although medical care for Thalassemia patients had seen improvements over the years, the pace of development was too slow, he said,

“[B]ut our lives cannot wait on the [slow] speed at which [work] is being carried out. In order to save lives, medical care for us must be of the best quality. This care must be provided to all without any discrimination.”

Individuals living with thalassemia often undertake costly journeys to Malé or regional healthcare centers at great cost for blood transfusions, he noted.

Muizz also called for specialized doctors and urged the establishment of an international clinical protocol or medical guideline for Thalassemia patients.

According to the Ministry of Health, 26 new Thalassemia patients register for treatment every year.

Meanwhile. local television station Raajje TV said a 21-year-old female living with Thalassemia had been transfused with infected blood leading to lung complications and swollen veins. The woman is reported to suffer from diabetes as well.

Doctors at state owned Indhira Gandhi Memorial Hospital (IGMH) told the patient she was suffering from complications due to the diabetes and that the hospital could not offer her further treatment. It was only when the family went to Sri Lanka that they found out the cause of her symptoms was bacteria infected blood.

A family member told Minivan News today that the woman had sought treatment in Sri Lanka and is doing well now. The family declined to comment further.

In March, a pregnant woman was given HIV positive blood at IGMH leading to a public outcry over deteriorating health care services.  An Indian laboratory technician has been arrested over the case.

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Beta Thalassemia and Healthcare Assistance for Maldives from Italy

The Abruzzo region of Italy, 50 miles east from Rome, has signed a declaration with the Maldivian government providing increased assistance for the Maldivian health sector.

Each year, the Abruzzo region will provide transplantations for ten Maldivians with Beta Thalassemia.

The Abruzzo region and the government of Maldives will also share knowledge and best practices in healthcare, Beta Thalassaemia programs and consultations on Thalassaemia projects in the Maldives.

The agreement was signed during President Nasheed’s ongoing visit to Italy.

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Nine children with thalassemia die every year

Nine children with thalassemia on average die in the Maldives every year, the National Thalassemia Centre has revealed.

A press release issued by the centre last week on the occasion of the World Thalassemia Day states that on average 28 child with the inherited blood disease were registered at centre every year for the past five, while six of them on average passed away each year, according to Haveeru.

Moreover, 18 percent of the population in the country were thalassemia carriers. The centre has registered 694 children since its formation 16 years ago.

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