Do you or your child have thalassemia? Let's talk about Beta Thalassemia

Do you always feel tired and lethargic? Sometimes we think these things are normal, but behind them there may be a blood-related disease. Beta Thalassemia is a disease that is passed down from generation to generation in our genes, but it can be treated. Many people have fears and doubts about this. So today, let's talk about this clearly and simply.

Simply put, what is beta thalassemia?

It's very simple. We have cells in our blood called red blood cells. These cells are responsible for carrying oxygen to all parts of our body. There is a special protein that helps red blood cells do this job properly, called hemoglobin .

Now, in a person with beta thalassemia, the body doesn't produce enough of this protein called hemoglobin. What happens then? The red blood cells can't do their job properly, and they get destroyed quickly.

When there are not enough healthy red blood cells, the body does not get the oxygen it needs. We call this condition anemia . Anemia can make you feel tired, weak, and short of breath. If this condition continues, it can also damage important organs in our body.

What are the main types of beta thalassemia?

There are three main types of beta thalassemia, depending on their severity. It is very important to understand this precisely.

What are the symptoms of this disease?

Symptoms can vary from person to person, depending on the type of thalassemia you have and how severe it is.

• A person with thalassemia minor may not have any symptoms.
• People with thalassemia intermedia and major may experience one or more of the following symptoms:
• Pale skin: The skin appears pale and discolored due to lack of blood.
• Extreme fatigue and weakness: Feeling lethargic, constantly tired.
• Abdominal bloating: The abdomen protrudes forward due to enlargement of organs such as the liver and spleen.
• Dark-colored urine: Urine becomes dark in color.
• Growth retardation: Children's physical development occurs more slowly than other children.
• Facial bone deformities: In some severe cases, changes in the shape of the facial bones.
• Jaundice: Yellowing of the skin and whites of the eyes.

How to diagnose this disease?

This disease is most often diagnosed between the ages of 6 and 12. It can be detected by chance when you visit a doctor due to symptoms of anemia, or during a routine blood test done for another reason.

Sometimes, when you see anemia, you may mistakenly think that the cause is iron deficiency. If you give iron tablets at such a time, it can be harmful to a thalassemia patient. Therefore, it is very important to see a hematologist to diagnose the disease correctly.

Since it runs in families, there may be people with thalassemia in your family or relatives. Also, this disease is more common in people from countries like Asia, the Middle East, Italy, and Greece.

Some of the main tests used to diagnose the disease are:

• Complete Blood Count (CBC): This checks the number, size, and maturation of red blood cells, white blood cells, and platelets in your blood.
• Hemoglobin electrophoresis: This is used to find out exactly what types of hemoglobin are in your blood and in what quantities.
• Tests for pregnant mothers: If a pregnant mother has a thalassemia carrier state, tests such as Chorionic villus sampling (CVS) or Amniocentesis can be performed to determine whether the baby in the womb has also been affected.

What are the treatments?

The treatment you receive will depend on your type of thalassemia and its severity.

• For those with mild conditions (Minor): No treatment may be needed.
• For people in intermediate condition: Sometimes, such as when an illness or infection occurs, a blood transfusion may be necessary.
• For those in severe condition (Major): Since these people have severe anemia, regular blood transfusions are essential.

Donating blood frequently can lead to an unnecessary build-up of iron in the body. This is called ``Iron overload.'' This excess iron can build up in organs like the heart and liver and damage them. To prevent this, a treatment is done to remove excess iron from the body. It is called iron chelation therapy . This is given as a pill or injection.

In addition, the following treatments can be used as directed by your doctor:

• Spleen removal surgery.
• Bone marrow transplant .
• Modern treatments such as gene therapy.

How to live healthy with thalassemia?

Although living with thalassemia can be challenging, there are many things you can do to take care of yourself.

Things you can do

• Healthy diet: Eat more fruits and vegetables. However, ask your doctor if you should limit iron-rich foods (meat, fish, some vegetables, and iron-fortified cereals) .
• Regular exercise: Engage in gentle exercise like walking and cycling.
• Follow your doctor's instructions: Follow your blood donation dates and medication intake schedules exactly. See your doctor on the scheduled days.
• Protect yourself from infections: Wash your hands often. Stay away from people who are sick.
• Get vaccinated: Get all vaccinations recommended by your doctor, such as the flu vaccine, on time.
• Think about your mental health: It's hard to go through this journey alone. Talk to your family and friends. If necessary, seek the help of a psychiatrist or psychologist.

Advice for caregivers

If you are the caregiver of a child or family member with thalassemia, your role is very important.

Beta Thalassemia, blood disorder, anemia, hemoglobin, Cooley's Anemia