We have brought to light the misinformation pollution that is known to be true about the blood disease known as ‘thalassemia’ in the medical language known as hereditary blood disease and ‘Mediterranean anemia’ in public! From time to time, false information about thalassemia disease can cause patients to apply the wrong treatment. Specialist from Memorial Şişli Hospital Hematology Department. Dr. Şebnem İzmir Güner gave valuable information about the known mistakes about thalassemia before the “May 8 World Thalassemia Day”.
10 WRONG FACTS THAT ARE KNOWN ABOUT THHALASEMIA
Thalassemia, a hereditary blood disease, is popularly referred to as Mediterranean anemia due to its severe prevalence in the Mediterranean Region. Thalassemia, which is also frequently seen in people of Arab origin and Balkan immigrants, is seen around 2% in our country. Thanks to premarital examinations, babies who may be born sick can be detected in advance and necessary precautions can be taken. However, there is information about thalassemia in the middle of the public.
ATTENTION TO THE SEPARATION BETWEEN DISEASE AND CARRIER!
In order to recognize thalassemia, first of all, the distinction between the disease and carrier should be noted. Those with thalassemia are called thalassemia major and those who are only carriers are called thalassemia minor. Some of those with thalassemia major die during childbirth. Survivors must either receive lifelong blood support or have a bone marrow transplant to become fully viable. Major patients can get rid of the disease completely with bone marrow transplantation. Carrier minor patients, on the other hand, can continue their lives without blood support and without the need for bone marrow transplantation.
The only problem that carriers face in their longevity is that they get tired more quickly than healthy people as a result of anemia. In addition, if the individuals they will marry are carriers, these patients are warned not to have a baby in the usual way. There is a risk of disease in the baby to be born. For this reason, in couples where both mother and father-to-be are carriers, it is possible to have children with in vitro fertilization technique.
COUPLES CAN BE MARRIED IF THERE IS A CARRIER!
If both couples have thalassemia minor, that is, carriers, in premarital tests, these couples can marry, but they are warned to get genetic counseling and use in vitro fertilization formula to give birth to a child. Children born from these couples; either they are healthy, they are carriers or they have thalassemia. For this reason, this risk is not taken into account legally, and ordinary birth is tried not to be allowed.
In couples where only one of the parents is a carrier, the baby is born carrier or completely healthy, in which case the couples do not need to have in vitro fertilization and genetic counseling. There is no genetic possibility that the baby to be born will have thalassemia major.
PATIENTS WITHOUT BONE MARROW TRANSPLANTATION SHOULD NOT IGNORE THE HEMATOLOGICAL FOLLOW-UP!
In the past, when premarital thalassemia tests were not a legal requirement for couples, sick children could be born from two carrier parents. These babies either died at birth or continued their lives by always receiving blood support. In these patients, in cases where there is no chance of a bone marrow transplant, the time has passed, and a suitable donor cannot be found, life-long blood support is provided 1-2 times a week. Hematological follow-ups of patients who cannot have a bone marrow transplant should be done regularly.
Because their bodies cannot produce enough blood and frequent blood supplements cause iron accumulation in valuable organs such as heart and liver in patients. For this reason, these patients are given iron chelation drugs that remove excess iron from the body.
ATTENTION TO FEEDING MINOR CARRIER PATIENTS!
Patients with thalassemia major or carrier minor can suffer from iron deficiency anemia as well as thalassemia. Adding iron deficiency anemia to thalassemia causes anemia to increase even more. While minor carrier patients can balance anemia by paying attention to nutritional offers, the rate of blood support given in thalassemia major patients is increased.
10 FAULTS THAT YOU KNOW ABOUT THALASSEMIA!
1) Wrong: I am a carrier of thalassemia and may have leukemia in the future.
Truth: Thalassemia does not turn into any cancer or other disease, including leukemia.
2) Wrong: Thalassemia carriers spend their lives in hospitals.
Truth: Carriers go to inspection 1-2 times a year. Thalassemia carriers do not need to change their lives according to their disease. They can continue their normal lives. However, thalassemia major patients can only get rid of the disease by bone marrow transplantation. Patients who cannot have a bone marrow transplant stay in hematological follow-up by receiving lifelong blood support.
3) Wrong: I am a carrier of thalassemia. Even if I marry someone who does not have this disease, I cannot have children.
Fact: When carriers marry healthy people, the children will be either completely healthy or carriers. For this reason, these couples can have children in the usual way without the need for IVF. Only when two surrogate couples get married can a child be born sick. Therefore, these couples should receive genetic counseling and have a child through IVF.
4) Wrong: I’m a carrier of thalassemia, I have to be careful about my diet for a long time.
Correct: Carriers only need to pay attention to nutritional rules so that iron deficiency anemia is not added to their disease. In major patients, blood supply is essential and paying attention to nutrition does not cure anemia.
5) Wrong: Two carriers cannot marry, and even if married, they can never have children.
Truth: Two surrogate couples can marry and have children through the IVF procedure.
6) Wrong: I can get rid of thalassemia by paying attention to my diet.
Correct: Thalassemia major or thalassemia carriers can ensure that iron deficiency anemia is not added to the disease by paying attention to their diet. Apart from this, it is not possible to become beautiful by paying attention to nutrition in both types of thalassemia.
7) Wrong: I had thalassemia, I had a bone marrow transplant and became beautiful. However, my disease may recur in the future.
Fact: Thalassemia major patients who are eligible for a bone marrow transplant do not get thalassemia disease again.
8) Wrong: Thalassemia will limit my whole life, I will be deprived of many things. I will not be able to choose the profession I want.
Correct: Thalassemia major patients don’t have to limit anything in their lives as long as they don’t get iron deficiency anemia after a bone marrow transplant and get better. They can do sports except competitive sports that require high effort and can choose all professions that do not require high effort.
9) Wrong: I had thalassemia major, I got better after a bone marrow transplant. However, if I consume foods and beverages known to cause anemia, such as tea, my disease will recur.
Correct: Thalassemia does not recur or progress with food and drink. It is not a disease that can be cured with food and drink.
10) Wrong: Thalassemia is contagious.
Correct: No form of thalassemia is contagious.
