UAE’s Thalassemia Community Celebrates New Freedom
The nation’s thalassemia community came out at the weekend to participate in a morning of fun-filled indoor snow sports activity to celebrate the new found freedom and exhilaration that comes with the UAE’s approval of a new drug to treat the otherwise burdensome disease.
“Today is one of great medical significance for the UAE,” said Dr. Khaula Belhoul, Director of the Dubai Thalassemia Center, commenting on the country-wide availability of breakthrough iron chelation drug Exjade.
“We believe that Exjade will allow us to ease the pain of thalassemia sufferers by making treatment compliance easier, thus greatly reducing the possibility of patients abandoning their necessary traditional treatment regimes due to the inconvenience that comes with the use of a pump,” added Dr Belhoul.
A random study conducted in 2002 found that one in twelve UAE nationals has the traits of thalassemia, a figure which puts the UAE high on the international list of per capita prevalence for the disease trait and consequently the disease itself.
Iron overload is a cumulative, potentially life-threatening, unavoidable consequence of chronic blood transfusions used to treat certain types of rare chronic blood disorders, including thalassemia and sickle cell disease, as well as other rare anemia and myelodysplastic syndromes.
Signs of iron overload may be detected after as few as twenty units of blood. If left undiagnosed or untreated, the excess iron in the body is likely to lead to damage of the liver, heart, endocrine glands and other organs in the body.
The body has no inherent mechanism to remove excess iron, so iron chelation is used as an effective treatment for transfusion-related iron overload.
The Exjade drug, which is taken once daily as a drink, is a significant improvement over previous iron chelation treatments, which require frequent, subcutaneous infusion lasting eight to 12 hours per night for five to seven days per week as long as the patient continues to receive blood transfusions or has excess iron in the body.
"Freedom of moment and independence is what these young thalassemia sufferers want most, and today we are giving this freedom to them with the introduction of the Exjade therapy. The snow day experience, we believe, is symbolic of both newfound freedom and independence, but it also represents an uplifting experience that each participant will take with them for the rest of their lives,” said Jihad El Kaissi, Middle East regional manager, Novartis Oncology.
Exjade has been approved for use across the UAE and is available by prescription only.
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