The Social Challange
Thalassaemia
Thalassaemia
Thalassaemia is a anaemic blood disorder. A person suffering from this disorder has defective manufacture of hemoglobin and ineffective erythropoiesis ie. manufacture of blood cells in the bone marrow. Thalassaemia is one of the most common inherited disease.This disorder is geographically common in the people of Mediterranean, African and Southeast Asian origin. The cause of the disease is not known other than the fact that it is an inherited disorder.
Thalassaemia Major is the severe type where the patient has acute anaemia. The patient has frequent leg ulcers, enlarged spleen and jaundice. Ineffective erythropoiesis causes abnormal skeletal development. The long bones suffer frequent fractures and growth is stunted. Iron deposits in the heart muscles can cause complications and heart failure. Iron deposits in liver lead to dysfunctioning of the liver. The life expectancy of Thalassaemia patients is greatly diminished.
Thalassaemia Minor patients have slight anaemia but lead normal lives. Such patients at times do not even know they are carrying the disease. It is discovered only after a special blood test. Sometimes a Thalassaemia Minor patient discovers the disease after his/her child has Thalassaemia Major. Therefore it is of prime importance to know if you have Thalassaemia Minor when you want to start a family.
The only treatment for Thalassaemia Major is periodic blood transfusions every 3 to 4 weeks. Children with periodic blood transfusions lead quite normal lives upto the age of 20 to 25 years. With each blood transfusion the red cells in the new blood are broken down over a period of 4-5 months. However the iron from the red blood cells remains in the body and can damage the liver, heart and other body organs. If this is not prevented most patients die in their early twenties. Therefore the blood transfusions have to be supplemented by drug treatment to remove the extra iron from the body. The treatment is very successful and most children treated with blood transfusions and drugs lead fairly normal healthy lives. However the treatment is unpleasant and hampers with an active social life.
Thus following comprises treatment during life of Thalasaemia Major Children.
· Establishing Thalassaemia Day Care centers.
· Making Blood available to Thalasaemia.
· Identify Donors for Thallasaemia with Negative Blood Groups.
· Providing iron Chelation.
· Ensuring vaccination for hepatitis B.
· Periodic testing for health parameters.
· Providing facilities for psychological counseling.
· Splenectomy when indicated.
· Bone marrow transplant.
· Workshops for children and their parents.
Entertainment programmes.
WHAT IS Arpan DOING FOR THESE CHILDREN
a) Blood transfusion – on an average twice every month.
b) Filters during transfusion
c) Folic acid tablet
d) Iron chelation – every day
e) Serum ferritin Test – once in 3 months
f) Heart condition test (ECG, 2D Echo) once in 12 months
g) Full blood test (including TTDs) once in 12 months
h) Endocrine Tests – once in 12 months
YOU CAN MAKE THE DIFFERENCE TO THESE CHILDRE BY SUPPORTING ABC IN THIS NOBLE CAUSE:
Per Child Per Month Cost Chart for Treatment:
1) Blood Transfusion Twice a month Rs. 1500
2) Filters Twice a month Rs 1400
3) Blood Sets Twice a month Rs. 200
4) C.B.C Twice a month Rs. 200
Rs. 3300
Medicine
Folic Acid Tablet Rs. 150
Chelation
Only Desferal Rs. 11000
Only Kelfer Rs. 1500
Combination of Desferal and Kelfer Rs. 8200
Periodic Tests
1) Serum Ferritin Rs. 250 every 3 months Rs. 83
2) Full blood test Rs. 1200 every 12 months Rs. 100
3) Heart condition Rs. 5000 every 12 months Rs. 417
4) Endocrine Rs. 2000 every 12 months Rs. 168
5) Bone Scan Rs. 2500 every 12 months Rs. 208
Rs. 976
Arpan has adopted 200 Thallasaemia Major children. The estimated expenses for their treatment per annum is INR 36,00,000..
We appeal you to come forward and support the cause with generous heart.
Please contact our Director, Varsha on 9975565001 to know the details
