Goal:
One of my wishes is to make Thalassemia free Pakistan.
Problem:
Thalassemia is one of the fatal diseases increasing day by day in our beloved country. Approximately 1 lac patients of thalassemia major are present in our country and 7% of our population are thalassemia minor this ratio came in crore. If we cannot take it seriously and cannot stop its spreading i.e cannot stop marriages among these minor patients. we will face a lot of difficulties and critical situations in our future.
Thalassa means Mediterranean. Semiya is from anemia which means Deficiency of Hemoglobin.
A disease in which there was a deficiency of HB found around Mediterranean were named as Thalassemia in 1930 which later turned out to be a genetic disease.
Definition:
An inherited disease in which the body forms less or abnormal hemoglobin. Inherited means the disease that can be transferred from parents to offspring. Hemoglobin is a type of protein found in blood which carries oxygen to the whole body. If there is less or abnormal hemoglobin then supply of oxygen to the whole body becomes interrupted which can cause damage. There are mainly three types of HB.
Hb A 97%. Hb A2 which is 1 to 3%. Hb f 0.5–1%.
All are made of four chains having differing combinations.
Types of thalassemia:
Based on above chain in HB and their genetic origin broadly divided into two types
Alpha thalassemia:
It has 4 subtypes
Beta thalassemia:
It is the more common type and all activists and health workers are concerned about this one. It has 3 types i.e Minor. Major and Intermediate.
Thalassemia Major:
It is the main disease in which blood cannot be produced normally and all the consequences can be produced.
Thalassemia Minor:
Only one chain is affected, the person itself is fine but can transfer disease to children.
Thalassemia Intermediate:
Also similar to minor.
Genetics:
If both parents are normal then all kids will be normal. If one parent is Minor then there are 25% chances in each kid to be minor it means no issue is there.
If both parents are minor then 25% chances that each kid will be major and 50% chances that kid will be minor.
Prevention:
Tests before marriages
Screening test
Simple CBC test if HB is low then dived MCV/RBC. If it’s less than 13 then most likely to be minor
Hb electrophoresis
Confirmatory test
In Case two thalassemia manors got marriages then CVS test can be done in the first three months of pregnancy to check the baby for thalassemia status. If it’s thalassemia major then Fitwa is available so that we can abort the pregnancy.
Complications
Low Hb, low oxygen lead to organs damage can lead to death
Low immunity lead infections
Blood transfusions lead to severe complications. Heart, eyes, boons, liver and every organ can be affected.
Treatment
- Blood transfusion
2. Iron chelating therapy
3. Splenectomy
4. Bone marrow transplant
Statistic in Pakistan
Every year 5000–9000 new thalassemia major’s patients are being diagnosed. We have 55k Registered thalassemia major’s patients and 50k unregistered patients in Pakistan. About 7% population are thalassemia minor which is 98lac -1 crore 20 lac in numbers.
Visits to various foundation:
We visit the frontier foundation of thalassemia situated at Abdara road Peshawar and spend time with these innocent children.
Awareness session for Blood donation:
At Paraplagic center Peshawar we arrange an awareness session about thalassemia and campaign for blood donation. Dr Syed Muhammad Ilyas CEO of Paraplagic center also join us at that session on 7th april.
