It is frequently stated that each human is the author of his own state of well-being and that diseases are contracted as a result of his proclivities and connections. But it is not denied the fact that some of people are born with diseases which last till death. Researchers have found that more than 4,000 genetic diseases are caused by a mutation in the gene. Thalassemia is one of them and is a serious monogenic disorder worldwide. Thomas Cooley in the year 1925 who used to observe the patients infected with Cooley’s anemia disease. This review would enunciate the difficulties that patients face and how we can help thalassemia patients.
TABLE OF CONTENTS:
1. What is the theme of
2. What are the thalassemia carrier symptoms?
3. How can we aid the patients in thalassemia treatment?
4. What are the ways for thalassemia diagnose.
5. Conclusion
What is the theme of World Thalassemia Day for the year 2023?
Every year since 1974, on this special day, Thalassemia International Federation (TIF) focuses on distinct themes which encourage individuals who are suffering to live a better life and to meet appropriate treatment needs with proper Thalassemia diagnosis.
● This year’s theme for World Thalassemia Day 2023 is- “‘BE AWARE. SHARE. CARE.: Strengthening Education to Bridge the Thalassaemia Care Gap.” Since 1994, TIF conducts numerous activities for the day with the objective behind to draw the attention of patient associations, health care professionals, and many more to promote discussions and take action for thalassemia treatment on time.
What are the thalassemia carrier symptoms?
Thalassemia is an autosomal recessive blood disorder related to chromosome 16 which passes from parents to children through genes. It is of two types- Alpha thalassemia, when alpha globin protein of haemoglobin is missing ,and beta-thalassemia is when a beta chain is missing. In this disease, a large number of red blood cells get destroyed in the body which causes hurdles in the production of haemoglobin. In other words, the victims have fewer RBCs and little hemoglobin. It is known that red blood cells are responsible for carrying oxygen to all body parts.
● If there are not enough red blood cells, the oxygen will be lesser to deliver to all body parts. Hence, the person feels week, tired. This condition is known as anemia. It is found that severe anemia may lead to death and cause organ damages.
● Bone marrow is the house of RBCs. Due to hard work of bone marrow to manufacture RBCs, it might grow bigger than normal. This causes bones to expand.
● Abnormalities with the urinary system, and skin appears pale yellow due to less amount of RBCs. Moreover, it gives rise to diseases such as chronic leg ulcers, gallstones, hepatomology and distortion of ribs.
The patients who suffer from b-thalassemia require regular blood transfusions and folate supplements for survival.
● The patient with excess iron during transfusion, need chelating therapy to remove iron and with transfusion, there is always the risk of alloimmunization.
3. How can we aid the patients in thalassemia treatment?
The treatment of the victim depends on how acute the thalassemia is. The more severe the thalassemia, the greater is the need of haemoglobin for the body. Numerous patients depend on blood transfusions to survive and need blood every two to three weeks.
● One can help the victim by donating blood. As it is one of the easiest ways to help and to save a life. Also, one-time blood donation can save up to 3 lives.
● Apart from this, we can motivate others towards blood donation to meet the blood requirement. There are a plethora of benefits of donating blood:
►Maintains a healthy heart rate and reduces the risk of cirrhosis and liver damage.
► Stimulates blood cell production that further maintains good health.
●Several organizations such as Indian Red Cross Blood Bank, Blood Cross Society, Rotary Blood bank, Dera Sacha Sauda regularly assist to provide blood to patients for thalassemia treatment.
What are the ways for thalassemia diagnosis?
Every year total of 100,000 children are born with thalassemia worldwide, and of these, 10,000 are born in India. The only way to prevent disease is through genetic counselling.
- Prenatal tests aid to detect this disorder before birth. Diagnosis at genetic level aids to diagnose disease before birth.
- Pre-marital screening is necessary to avoid having more blood-disorder patients. This will assist to reduce the incidents of disorder. The tests include Complete Blood Count, iron studies ,and Haemoglobinopathesis Evaluation test.
Conclusion
Victims of blood disorders such as anemia, haemophilia, thalassemia regularly require a blood transfusion to survive as there is no proper treatment available for genetic disorders like these. On this World Thalassemia Day, let’s raise our hands together to help victims by donating blood.
