Brief about Thalasemia

Thalassemia & Sickle Cell Society

  Door No 22-8-496 to 501, Chatta Bazaar ‘X’ Road

                                      Near City Civil Court, Purani Haveli,

 Hyderabad   500002. Ph: 040- 24560011, 64610610                                               Email:tscsap@gmail.com. [www.tscs.in] 

WHAT IS THALASSAEMIA?

Thalassemia is an inherited disorder of the blood. It reduces the amount of hemoglobin (red blood cell) your body can make, thus resulting in the inability of the red blood cells to carry a sufficient supply of oxygen to where ever it is needed in the body. This will cause anemia and if not treated, the heart and other organs in the body will slowly fail due to the lack of oxygen and the patients will usually die within 1 to 18 years old.

Many people originating from the Mediterranean area, the Middle East, Africa or Asia have thalassaemia trait in their genes. It is common in these regions because it helps to protect carriers against malaria. However, in this modern age, thalassemia is seen as a serious illness that affects children of all races.

Facts about Thalassemia

Ø  Thalassemia is a serious Inherited Blood Disorder.

Ø  4.5% of world population (250 million) is thalassemia minor.

Ø  There are over 35 million Indians are carriers of the abnormal Gene for Thalassemia.

Ø  It is estimated that about 100,000 infants are born with major Haemoglobinopathies every year in the world.

Ø  10,000 -12, 000 Thalassemic children are born every year in our country.

Ø  Survival depends upon repeated blood transfusion & costly medicines.

Ø  Thalassemia can be prevented by awareness, pre-Marital / pre-conceptual screening followed by antenatal diagnosis is required.

Statistics of Society

1286 cases are registered with society. 992(77%) cases are of B thalassemia major. 500 to 600 are coming to the society for regular blood transfusion.

450 cases are on Iron chelation. 15 –20 % cases can’t afford Iron chelation because of financial constraints.

Management of Thalassemia

Ø  Saline washed packed red cell blood transfusions every 3 – 4 weeks to maintain hemoglobin above 10 gm/dl.

Ø  Iron Chelation therapy after 20 blood transfusions.

Ø  Periodic medical checkup for serum ferritin level, liver function test & screening for hepatitis B and C, HIV , renal function tests, serum calcium & phosphorus level, dental checkup, cardiac checkup and endocrine function tests.

Ø  Bone marrow transplantation can cure the disease but in only 30% of siblings can Histocompatibility Linked Antigen (HLA) matched donor is available. Besides it is very expensive and there are chances of rejection.

Cost of the Treatment

1.      Blood Transfusions is Free from Red Cross Society.

2.       Leucodepletion Filters Rs. 1,000/- per Transfusion.

3.       Iron Chelation:        

      Parental Chelation

            Desferral

a.            Pump Rs. 14,100/-

b.            Drugs Rs. 8,000/- to 10,000/- per month.

                       Oral Chelation

a.    Asunra:  Rs. 2,000/- to 10,000/- per month.

b.    Kelfer :   Rs 750/- to 4000/- per month

                             Other:

a.    Drugs & Disposables Rs. 500/- to 1,000/- per month.

Appeal to individuals & Families

¥ Donate blood once in every four months.

¥ Adopt a thalassemic child for treatment and management.

Appeal to Government & Pharmaceutical Companies

     ¥ Subsidization of drugs used in Thalassemia management and treatment

    ¥ Government aid and contribution for the awareness programmes of genetic                   diseases and in particular screening, management and treatment of Thalassemia.