Thalassaemia is one of the most difficult hereditary diseases to live with. Even though there is no cure, parents can prevent their child from being born with this terrible disease if they are careful. Thalassemia is a blood illness. It is an inherited disorder. If even one parent is a carrier of thalassemia, the child will be born with this blood disorder. Our blood contains haemoglobin - a protein molecule. It carries oxygen to all parts of the body. But some people are born with an unnatural form of haemoglobin or certain important fragments of their gene are deleted. This destroys healthy red blood cells and thalassemia sets in.
However, preventing the spread of disease in the world has proven difficult due to the lack of proper awareness about the condition. This is why the World Health Organization established May 8th as World Thalassaemia Day.
Importance of World Thalassaemia Day
World Thalassemia Day is celebrated on 8th May, every year. It is also a day when the medical organizations around the world come together to plan and raise awareness about the disease. Camps are set up in various cities and villages to educate people about the dangers of Thalassaemia and teach them about prevention measures of it.
It has a two-fold purpose. Firstly, on this day, we commemorate the people who lost their lives to thalassemia but are still cherished in our hearts. Secondly, this day is all about spreading awareness regarding this illness and extending support to people who have been diagnosed with thalassemia. The more people know about thalassemia, the more equipped they would be to deal with the illness. And eventually, the world will be able to eradicate this disease. With that in mind, let us understand thalassemia better.
Aside from spreading awareness, there are other important reasons for celebrating World Thalassaemia Day. These include -
What are the symptoms of thalassemia?
Thalassemia has some distinctive symptoms. They may vary from one individual to the next but every patient experiences a combination of these symptoms-
The symptoms usually manifest in late childhood or early adolescence.
Treatment of thalassemia - The most widely-prescribed mode of treatment is blood transfusion and intake of iron supplements so that your body has enough haemoglobin. At the same time, you will undergo chelation to drain the extra iron from your body. A bone marrow transplant can treat thalassemia in children.
Some of the utilized treatments include:
This World Thalassemia Day let us promise to get tested before we have children and do everything in our capacity to help those who have to live with the illness.
Thalassemia is a blood illness that destroys haemoglobin in the blood. Unless managed properly, thalassemia can be fatal. Keeping the disease under control involves not just blood transfusion, folate intake and chelation therapy but also diet. What the patients eat has an impact on how well their bodies will respond to treatment.
Diet for thalassemia patients
Thalassemia can trigger nutritional deficiency illnesses, haemolytic anaemia, diabetes and iron build-up (because of regular blood transfusion and intake of iron supplements). So thalassemia patients have to be very particular about the foods they eat to prevent any of these complications setting in. Their diet should be a mix of the following-
Patients who do not require blood transfusion are recommended 1 mg of folate consumption every day and a low-iron diet. People who require blood transfusion and chelation therapy (which removes the excess iron from the blood) are advised to lay off iron-rich foods. Here are some nutrients that all thalassemia patients need-
Foods to avoid
Certain foods that are rich in iron must be avoided to prevent liver and heart problems-
With a careful diet, thalassemia patients can live a normal life and increase their life expectancy. Avoid iron-rich foods and follow your dietician's instructions and you can be quite healthy.
Thalassemia is a grave blood disorder. That is why people who have been diagnosed with it need to be extra careful with how they live their lives. The focus is on always making healthy lifestyle choices. This improves the quality of their lives, helps manage the disorder and will have a less detrimental impact on their lifespan.
Keep the illness under control - With proper care and intervention, thalassemia can be managed efficiently. To continue being healthy, thalassemia patients must opt for regular blood transfusions and chelation therapy. Since thalassemia depletes the haemoglobin content of blood and the body becomes starved of oxygen, fresh blood through transfusion provides the body with the haemoglobin it needs. Simultaneously, patients need folate therapy (iron supplements). Chelation therapy too is a must to remove the extra iron that builds up due to blood transfusion and folate intake. Otherwise, the excess iron may damage the liver and cause a heart attack. Do not miss any appointment with you haematologist or any therapy session.
Vaccination for immunization - People with thalassemia are prone to infections and precautions are necessary to prevent them. Otherwise, complications might arise. A few vaccines that every thalassemia patient needs-
Keep tabs on vaccination schedules and ask your doctor if booster shots are needed.
Exercising - Thalassemia can be weakening and many people with this blood disorder find high-intensity workout difficult. But moderate exercise is highly recommended for them. Exercise improves blood circulation and even improves immunity. Here are a few exercises that thalassemia patients should try-
Diet - Diet is as important as exercising in keeping the thalassemia patient healthy. But they have to be very cautious about what they eat and it is best to consult a doctor and a dietician to plan a meal routine. Since blood transfusion and iron supplements result in a lot of iron entering the body, it is best to limit your intake of iron through foods. Avoid cereals and fruit juices that are fortified with iron, spinach, meat and all other foods that are rich in iron.
Support network - Having a group of loving people around you is crucial for psychological health. The stress generated by having to live with thalassemia, the frequent trip to the doctor’s clinic, the blood transfusion sessions and uncertainty over the future can bring on anxiety and depression.
Having a strong support system can help in many ways-
When the thalassemia patient enters a sexual relationship, the use of contraceptive devices is recommended to prevent HIV or any sexually transmitted disease that can cause complications in thalassemia management.
Thalassemia need not affect the quality of your life. With a few measures, you can live a normal happy life.