Spreading awareness for the prevention of Thalassemia
By: Maryam Khalid
Tags: Thalassemia, Awareness, Blood Donation

Spreading awareness for the prevention of Thalassemia

“GIVE BLOOD.. SAVE A THALASSEMIA LIFE”

Thalassemia is a blood disorder passed down through families(inherited) in which the body makes an abnormal form or inadequate amount of hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen. The disorder results in large number of red blood cells being destroyed, which leads to anemia . This is caused by mutations in the DNA of cells that make hemoglobin.

Thalassemia, are of two types, alpha and beta thalassemia. The most common in Pakistan is beta thalassemia, that occurs when gene for beta globin chains of the hemoglobin molecule is defective. There are two genes in all of us for beta globin chain. If one is defective, the condition is called Thalassemia Minor and this is a benign state with no symptoms or problems in the individuals. If both genes are defective, then it is known to cause homozygous state i.e. Thalassemia Major.

Thalassemia Major is a severe disorder, wherein, the child is healthy until about 6 to 8 months of life. After which he/she develops anemia, enlargement of liver and spleen, hemolytic fascia(changes in the facial bones) and requires red blood cell transfusion to sustain life.

For the diagnosis following tests are being done. 1) Blood test called HPLC(high pressure liquid chromatography) in child as well as in parent. 2) Raised Fetal hemoglobin and elevated HbA2 levels in parents. 3) Genetic/molecular testing also can be done to identify the exact mutation in gene.

People with thalassemia are said to be immunocompromised, which means that some of the body’s defenses against infection are not working. When you are immunocompromised, it is easier for you to get infections and you sometimes need extra protection, like flu shots and other vaccines.

There is too much misery and suffering for a child born with thalassemia major. The blood transfusion has to start even before the child turns a year old. Babies are subjected to severe pain for four or five hours while being injected for blood transfusion. It is not easy for parents to see their child with needle pricks month after month for life. And, this is not the end. There are other major problems that show up. Girls often do not get their menstruation, or boys do not grow fully leading to other complications and hardships.

Risk of getting thalassemia: An individual is at risk of having thalassemia major if both the parents are carriers or thalassemia minors.

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In each pregnancy there is one in four(25%) chance that their child will have normal blood, a two in four(50%) chance that the child will have thalassemia minor or a one in four(25%) chances that the child will have thalassemia major.

A simple health check for the Thalassemia carrier status before starting a family can save your child from becoming a patient of Thalassemia Major, unending cycle of infections, suffering and misery.

Birth of thalassemia major children can only be prevented by knowing the thalassemia status of parents before child is conceived. If both parents are tested positive for the carrier state, they need to be counselled for prenatal diagnosis in first trimester of pregnancy to know whether the index fetus is affected or not . If affected, medical termination is advised to the couple. Your doctor may recommend a hemoglobin electrophoresis test to determine if you have a disorder that causes the production of abnormal hemoglobin, or any family history of inherited anemias such as thalassemia to screen for these genetic disorders before having children.

Many people with thalassemia requires life long blood transfusion, maintaining an adequate blood supply is of considerate importance in thalassemia community . Almost 6000–8000 thalassemia patients born per year in our country. They rely on blood transfusions and iron chelation. People usually conduct blood drives and blood camps to help collect blood donations .But Now as covid19 spread has increased to that extent that it has started affecting the Thalassemia patients as blood camps and blood drives are not being conducted to avoid gatherings and spread of covid19 virus.

I as an individual and as a team have come up with the solutions to overcome this problem on commercial scale.

We will provide public awareness on prenatal diagnosis of disease in order to prevent the increase in number of thalassemia patients. We will conduct social media campaigns to motivate people to volunteer for blood donation. And will provide awareness on importance of blood donation for a thalassemia patient.

3. We will collaborate with NGOs, that are working for collection of blood. Many NGOs like Fatimed Foundation and Sundas Foundation, they are working as a blood banks.

Sundas foundation is an NGO working as a Blood Transfusion Center for Thalassemia, hemophilia and blood cancer patients free of cost. We will collaborate with this foundation and provide them volunteers.