Let's be aware of Thalassemia!
The Theme for World Thalassemia Day 2023 is "Be Aware. Share. Care: Strengthening education to bridge the thalassaemia care gap", highlighting the empowering force of education and its association with appropriate and quality care for this disorder.
This May 8, show that you are aware and care about the thalassemia patients in your community. Improve your knowledge on thalassaemia, gather care information, share experiences and stories on social media, work with schools, professional, religious, or cultural platforms to spread awareness of the disease and unmet needs of the patients and make yourself widely heard.
What is thalassemia?
Thalassemia is a genetic disorder affecting the production of hemoglobin in the body, resulting in anemia. Hemoglobin is a complex protein present in red blood cells that play a vital role in the transportation of oxygen throughout the body.
Thalassemia is caused by mutations that happen in hemoglobin, leading to reduced or abnormal production of the protein. It is also called Mediterranean anemia, cooley anemia, beta-thalassemia and alpha-thalassemia.
There are mainly two types of thalassemia: alpha thalassemia and beta thalassemia. Hemoglobin is made up of two chains – alpha and beta. So if there is an abnormality in the alpha chain of hemoglobin, it causes alpha-thalassemia and any changes in the beta chain may lead to beta-thalassemia.
Symptoms of Thalassemia:
The symptoms of thalassemia can vary from mild to severe depending on the type and severity of the condition. Some common thalassemia symptoms include one or more of the following:
- Paleness
- Fatigue
- Lack of appetite
- Lightheadedness or shortness of breath
- Dark urine
- Jaundice
- In children, slow growth and delayed puberty.
- Bone deformities in the face
- Abdominal swelling
Thalassemia can lead to other health problems:
An enlarged spleen
Your spleen fights infections and filters out damaged blood cells. When you have thalassemia, your spleen may have to work harder than usual, causing it to enlarge. If your spleen grows to be too large, it may need to be removed.
Infections
People with thalassemia are more likely to develop blood infections, especially if they receive numerous blood transfusions. Some infections can be worsened if your spleen has been removed.
Bone problems
Thalassemia can result in facial and skull bone deformities. Thalassemia patients may also have severe osteoporosis (brittle bones).
Too much iron in your blood
This can damage the heart, liver, or endocrine system (hormone-producing glands in the body, such as the thyroid and adrenal glands).
Thalassemia treatment
- Treatment for thalassemia is determined by the type of thalassemia and the severity of the symptoms. If you have only mild or no symptoms, you may only require little or no treatment.
- Blood transfusions: Regular blood transfusions and folate supplements are used to treat moderate to severe forms of thalassemia. Folate (also known as folic acid) helps your body in the production of healthy blood cells. Alpha thalassemia is frequently confused with low-iron anemia, and iron supplements may be prescribed as a treatment. Iron supplements, on the other hand, have no effect on thalassemia.
- Chelation therapy: Too much iron may accumulate in your blood if you have frequent blood transfusions. If this occurs, you will require chelation therapy to remove excess iron from your body. If you get blood transfusions, you should avoid taking iron supplements.
- Bone marrow transplant:Bone marrow or stem cell transplants may help in the most severe cases by replacing damaged cells with healthy cells from a donor. A donor is usually a family member, such as a sibling.
Here's how one can live with Thalassemia!
You can’t prevent inheriting thalassemia, but you can manage the disease so that you can have the best quality of life possible. Key steps include:
- Stick to your treatment plan. Get blood transfusions as frequently as your doctor suggests. Take your iron chelation medication and/or folic acid supplements as directed.
- Get ongoing medical care. Maintain regular medical checkups and undergo any medical tests prescribed by your doctor. These may include thalassemia and general health tests. Make sure you get any flu,pneumonia,hepatitis B, and meningitis vaccinations that your doctor recommends.
- Maintain a healthy diet and stay hydrated. Wash your hands frequently and avoid crowds during the flu and cold season to reduce your risk of infection. Maintain a clean environment around your transfusion site.
- Look for information and support. To learn coping strategies, join a support group or talk with others with the disease.
Thalassemia is most common in people of Mediterranean, African, and Asian descent. It is estimated that 1.5 million people worldwide are affected by thalassemia. The condition is typically diagnosed through blood tests that measure the levels of hemoglobin and other blood components.
Prevention of thalassemia involves genetic counseling and testing for people with a family history of the condition. Prenatal testing can also be done during pregnancy to determine if the fetus is at any risk for thalassemia.
Many patients with thalassemia depend on blood transfusions to survive and thrive. So donating blood to such patients is one of the simplest ways to save lives. In fact, each pint of blood donated can save up to three lives! All you have to do is make an appointment at your nearest blood bank.
In conclusion, thalassemia is a genetic blood disorder that affects the production of hemoglobin, leading to anemia. It can range from mild to severe forms. Treatment options vary depending on the type and severity of the condition. Prevention involves genetic counseling and prenatal testing.
Let's all collaborate to raise awareness, spread knowledge, and fight for access to thalassaemia care for everyone and everywhere!
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