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Disease Burden

Worldwide, 15 million people have clinically apparent thalassemic disorders.
Reportedly, there are about 240 million carriers of b-thalassemia worldwide In India alone,
more than 30 million are carriers of thalassemia gene. Every year approximately 100,000 children with Thalassemia Major are born world over,
of which 10,000 are born in India it is estimated that there are about 65,000-67,000 b-thalassemia patients in our country with around 9,000-10,000
cases being added every year.

Disease Impact

Thalassemia can be inherited from two normal, yet thalassemia trait carrier (thalassemia Gowdais and Lingayat s from Karnataka etc have a higher carrier rate. , minor)
parents who might be totally oblivious of this trait until they have a thalassemia major child.
If treated and managed well these patients can have a near normal life in which they can marry and have normal children.
If parents or persons can be identified as thalassemia carriers before marriage, it becomes easy to prevent the disease in children.
Once a child is diagnosed to have thalassemia homozygous disorders, he/she has to take lifelong treatment.
Management includes regular 3 weekly filtered packed red cell transfusions, chelation therapy for iron overload, management of complications of iron overload and
transfusions, including osteoporosis, cardiac dysfunction, endocrine problems, Hepatitis B & C, HIV infection, CMV etc.
The cost of treatment of an average weight 4-year-old thalassemic child is around Rs. 90,000-100,000 annually in a private set-up.
Therefore, not more than 5-10% of thalassemic children born in India receive optimal treatment.
Stem cell transplantation as a curative treatment, which costs between 6 and 16 lac rupees is out of reach for majority of children.

'Besides bearing the cost of treatment, the psychological stress to both the patient and the parents/family is phenomenal! received so far:

In fact, it is startling to know from a 15 year old thalassemic child the account of what he has

• 250 units of packed red cells
• 4000 injections of desferioxamine
• Has had a needle in his body for >40,000 hours of his life
• Already spent Rs. 16,20,000 for chelation alone!

If this child lives for 50 years, then he would require:
• 2000 units of packed red cells
• 15,000 desferrioxamine injections
• 1.5 lac hours [ 6250 days or 17 years) of a needle in his body, and
• Rs 90 lacs for chelation alone!

This is besides the hospital expenses PLUS other medical care!

The birth of a thalassemic child thus places considerable strain not only on affected child & family but on society at large.
Therefore there is emphasis for shift from treatment to prevention of birth of such children in future. This can be achieved by:

  • Population education 
  • Mass screening of high risk communities for thalassemia minor 
  • Genetic counseling of those who test positive for thalassemia minor 
  • Prenatal Diagnosis

In a study done in Iran, it was concluded that the ratio of cost of treatment to prevention of thalassernia is 16:1.6.
They found that the total cost per case prevented was less than the cost of a single year of treatment for an individual with the disease! )
Regions like Cyprus & Sardinia have almost succeeded in preventsingthe disease.
Anyone Iiving in a country with a high prevaience of thalasserma should be screened so they can be aware of their thalassernic status,
and if required discuss the implications of this with their physician or a genetic counselor! )

Prevention is better than cure

It is important to identify yourself as possible carrier of thalassemia (thalassemia minor).
A person with thalassemia minor has a 25% (1 in 4) chance of having a baby with THALASSEMIA MAJOR if his/her mate also has thalassemia minor College students tested every year all over country to generate awareness
Those who are identified as minor/trait, prenatal detection & counseling helps
This prevents mental agony of the family, besides financial burden on family and health system )
Symptoms Some children with mild thalassemia have no symptoms at all. In children who do, symptoms of thalassemia can range from mild to severe depending on the type of thalassemia they are suffering We say the person is anemic when his/her hemoglobin (Hb) is less than 13 gm% in males, or in females from. when Hb is <1.2rng%, in pregnant women when Hb is < 11 gm%, <11 gm% in children between 6 months to 6 year; of age, & < 12 gm% in children older than 6 years. When Hb is less than 7 gm%, we say it is SEVERE anemia, & when it is less than 4 gm%, it is VERY SEVERE anemia.

Thalassemia is 99% not curable but 100% preventable? So get tested and have your THALASSEMIA STATUS REPORT before you tie the knot!

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