Medication
The outlook depends on the type of thalassemia. A person with the thalassemia trait has a normal life expectancy. However, heart complications arising from beta thalassemia major can make this condition fatal before the age of 30 years.
Procedures
Without treatment, the median survival time for myelodysplastic syndromes range from less than a year to approximately 12 years, depending on factors such as number of chromosome abnormalities and level of red blood cells. However, treatment is often successful, especially for certain types of this condition.
Self-care
Too much iron can result in damage to your heart, liver and endocrine system, which includes hormone-producing glands that regulate processes throughout your body. Deferiprone is an iron chelator indicated for the treatment of patients with transfusion iron overload due to thalassemia syndromes when current chelation therapy is inadequate.
Nutrition
You might also experience:
- Dizziness
- Shortness of breath
- A fast heart beat
- Headache
- Leg cramps
- Difficulty concentrating
- Pale skin
What is the life expectancy of someone with thalassemia?
How long can you live with thalassemia?
How to cure thalassemia?
What are the long term effects of thalassemia?
What is the best treatment for thalassemia?
Bone marrow and stem cell transplant from a compatible related donor is the only treatment that can cure thalassemia. It is the most effective treatment.
Is there any treatment for thalassemia?
Stem cell or bone marrow transplants are the only cure for thalassaemia, but they're not done very often because of the significant risks involved. Stem cells are produced in bone marrow, the spongy tissue found in the centre of some bones, and have the ability to develop into different types of blood cells.
How is thalassemia diagnosed and treated?
More serious types of thalassemia are usually diagnosed before a child is 2 years old. Blood transfusions are used to treat thalassemia. You may need occasional or more regular blood transfusions, depending on how serious your condition is. You may also take medicine to help with complications from this treatment.
How is thalassemia treated in adults?
If you have mild thalassemia, you might not need treatment. But more severe forms might require regular blood transfusions. You can take steps to cope with fatigue, such as choosing a healthy diet and exercising regularly.
Does thalassemia minor need treatment?
Mild forms of thalassemia trait don't need treatment. For moderate to severe thalassemia, treatments might include: Frequent blood transfusions. More severe forms of thalassemia often require frequent blood transfusions, possibly every few weeks.
Does beta thalassemia minor require treatment?
Beta thalassemia minor (beta thalassemia trait) is the mildest form. You or your child may not need treatment. If you have mild anemia, folic acid supplements can help. Folic acid is a B vitamin that raises the number of red blood cells that your body makes.
Can thalassemia take iron tablets?
If you have thalassemia trait, your physician may prescribe iron supplements because your red blood cells are smaller than is typical. Unless you also have iron deficiency in addition to thalassemia, this is not needed and should be avoided.
Why do thalassemia patients need blood transfusions?
The disease causes a drop in the amount of red blood cells you have. A transfusion gives you healthy red blood cells from a donor to make up for the ones you don't have. Regular transfusions can help prevent beta thalassemia complications like: Weak bones.
What is the treatment for alpha thalassemia?
Blood transfusions—are the main treatment for people with severe alpha thalassemia. This treatment provides healthy red blood cells with normal hemoglobin. Because red blood cells only live about three months, repeated transfusions may be needed to maintain a healthy supply of red blood cells.
How is iron deficiency treated in thalassemia?
Treatments for thalassaemia chelation therapy – treatment with medicine to remove the excess iron from the body that builds up as a result of having regular blood transfusions; some people with thalassaemia get a build-up of iron even without transfusions and need treatment for this.
What is the difference between anemia and thalassemia?
Anemia is a condition in which your body doesn't have enough normal, healthy red blood cells. Thalassemia is inherited, meaning that at least one of your parents must be a carrier of the disorder. It's caused by either a genetic mutation or a deletion of certain key gene fragments.
What are the 4 types of thalassemia?
Alpha thalassemia occurs when some or all of the 4 genes that make hemoglobin (the alpha-globin genes) are missing or damaged....There are 4 types of alpha thalassemia:Alpha thalassemia silent carrier. ... Alpha thalassemia carrier. ... Hemoglobin H disease. ... Alpha thalassemia major.
If I Have Thalassemia, How Does It Affect My body?
Since your body has fewer red blood cells when you have thalassemia, you may have symptoms of a low blood count, or anemia. When you have anemia, y...
How Is Thalassemia Treated?
The type of treatment a person receives depends on how severe the thalassemia is. The more severe the thalassemia, the less hemoglobin the body has...
How Do Blood Transfusions Affect My body?
People who receive a lot of blood transfusions are at risk for iron overload. Red blood cells contain a lot of iron, and over time, the iron from a...
How to manage thalassemia?
You can help manage your thalassemia by following your treatment plan and adopting healthy-living habits. Avoid excess iron. Unless your doctor recommends it, don't take vitamins or other supplements that contain iron. Eat a healthy diet. Healthy eating can help you feel better and boost your energy.
What is the best treatment for thalassemia in children?
Stem cell transplant. Also called a bone marrow transplant, a stem cell transplant might be an option in some cases. For children with severe thalassemia, it can eliminate the need for lifelong blood transfusions and drugs to control iron overload.
How to tell if a child has thalassemia?
If your doctor suspects your child has thalassemia, he or she can confirm a diagnosis with blood tests. Blood tests can reveal the number of red blood cells and abnormalities in size, shape or color.
What to do if you have a spleen removed?
Wash your hands frequently and avoid sick people. This is especially important if you've had your spleen removed. You'll also need an annual flu shot, as well as vaccines to prevent meningitis, pneumonia and hepatitis B. If you develop a fever or other signs and symptoms of an infection, see your doctor for treatment.
When should a baby be tested for thalassemia?
Testing can be done before a baby is born to find out if he or she has thalassemia and determine how severe it might be. Tests used to diagnose thalassemia in fetuses include:
Can thalassemia cause excess iron?
Some people with thalassemia who don't have regular transfusions can also develop excess iron. Removing the excess iron is vital for your health. To help rid your body of the extra iron, you might need to take an oral medication, such as deferasirox (Exjade, Jadenu) or deferiprone (Ferriprox).
What is the treatment for thalassemia?
Standard treatments for patients with thalassemia major are blood transfusions and iron chelation. Blood transfusion involves injection of red blood cells through a vein to restore normal levels of healthy red blood cells and hemoglobin.
When is thalassemia diagnosed?
Moderate and severe thalassemias are often diagnosed in childhood because symptoms usually appear during the first 2 years of a child's life. A complete blood count (CBC), which includes measures of hemoglobin and the quantity (and size) of red blood cells.
Why do we need iron chelation?
Iron chelation is removal of excess iron from the body. A danger with blood transfusions is that they can cause iron overload, which may in turn causedamage to other organs.
What are the symptoms of beta thalassemia?
Symptoms of beta thalassemia include growth problems, bone abnormalities such as osteoporosis, and an enlarged spleen (the organ in the abdomen that plays a part in fighting infection). People with thalassemia can get too much iron in their bodies (iron overload), either from frequent blood transfusions or from the disease itself.
What ethnicity is thalasemia?
Thalassemias occur more often among certain ethnicities, including people of Italian, Greek, Middle Eastern, Asian, and African des cent. Thalassemias are an inherited disorder, which means they are passed from a parent to their child.
Does thalassemia cause anemia?
People who have thalassemia produce fewer healthy hemoglobin proteins, and their bone marrow produces fewer healthy red blood cells. Thalassemias can cause mild or severe anemia and other complications that can occur over time ( such as iron overload).
Can thalassemia be treated with bone marrow transplant?
Heart disease from iron overload is the leading cause of death in patients with thalassemias, so keeping up with your iron chelation therapy is extremely important. A bone marrow transplant may cure thalassemia. Patients with thalassemia may need surgery to correct skeletal problems.
Why is chelation therapy important?
It's very important because high levels of iron in the body can damage organs. The treatment will usually need to start once you or your child has had around 10 blood transfusions. Medicines used in chelation therapy are known as chelating agents. There are 3 chelating agents currently available:
How often do you need a blood transfusion?
People with the most severe type, beta thalassaemia major, may need a blood transfusion about once a month. Those with less severe types may only need them occasionally.
What is the best treatment for gallstones?
gallstones may be treated with gallbladder removal surgery.
Is thalassaemia a long term benefit?
For people with serious types of thalassaemia, the long-term benefits of a stem cell transplant will need to be considered against the possible risks to help determine whether the treatment is suitable.
What is the International Thalassemia Day 2013?
Elliott Vichinsky to raise awareness of thalassemia and improve its diagnosis and management worldwide. Thalassemia is a complex group of diseases that are relatively rare in the United States but common in Mediterranean regions and South and Southeast Asia.
Is thalassemia managed in small programs?
The majority of patients are managed in small programs which may not have access to recommended monitoring and treatments. Therefore, an established network of care between thalassemia centers, local providers, and patients is required for optimal treatment of thalassemia patients in North America.
Why do people with thalassemia only find out about it?
People with less severe forms of thalassemia may only find out because they are having symptoms of anemia, or maybe because a doctor finds anemia on a routine blood test or a test done for another reason. Because thalassemias are inherited, the condition sometimes runs in families.
What are the two types of thalassemia?
When we talk about different “types” of thalassemia, we might be talking about one of two things: the specific part of hemoglobin that is affected (usually either “alpha” or “beta”), or the severity of thalassemia, which is noted by words like trait, carrier, intermedia, or major. Hemoglobin, which carries oxygen to all cells in the body, ...
How are thalassemia traits passed down?
In the same way that traits for hair color and body structure are passed down from parents to children, thalassemia traits are passed from parents to children. The type of thalassemia that a person has depends on how many and what type of traits for thalassemia a person has inherited, or received from their parents.
Where is thalassemia most common?
Traits for thalassemia are more common in people from Mediterranean countries, like Greece and Turkey, and in people from Asia, Africa, and the Middle East.
Can thalassemia be passed to children?
Because thalassemia is passed from parents to children, it is very hard to prevent. However, if you or your partner knows of family members with thalassemia, or if you both have family members from places in the world where thalassemia is common, you can speak to a genetic counselor (go to: https://www.nsgc.org/page/find-a-genetic-counselor. ...
What is the CDC's partnership with Cooley's Anemia Foundation?
CDC has partnered with the Cooley’s Anemia Foundation (CAF) to promote the health of people living with thalassemia. A major part of this program has been to provide credible health information to people with thalassemia and their families. The Foundation has developed and published a Guide for Living with Thalassemia.
Does CAF have a guide for living with thalassemia?
The Foundation has developed and published a Guide for Living with Thalassemia. CAF has also increased their social media presence and conducted outreach to people with thalassemia to increase access to credible health information on thalassemia and increase participation in their patient outreach program.
Do people with thalassemia need blood transfusions?
Red blood cell transfusions are an important part of medical care for many people with thalassemia. Although some people with thalassemia never need a transfusion, others may have infrequent needs, ...
Why is thalassemia rising?
The prevalence of thalassemia in the United States is rising due to immigration, new births, adoptions, and improved survival. Advances in monitoring and treatment have significantly reduced morbidity and mortality in transfusion-dependent thalassemia (TDT).
Why are TDT patients not managed?
But, a majority of the patients with TDT are not managed at such centers owing to long travel distance and lack of insurance portability. Lack of access to specialized care increases the risk of complications, shortens survival, and reduces health-related quality of life.
What is a specialty program in thalassemia?
A specialty program includes a team of thalassemia experts working closely together. This team includes a hematologist, a nurse specialist, a hepatologist, a cardiologist, an endocrinologist, a psychologist, a genetics counselor, a social worker, and a dietitian.
What is beta0 thalassemia?
The degree of excess nonfunctional alpha chains is the major predictor of disease severity. Beta0 thalassemia refers to the absence of production of beta globin. When patients are homozygous for a beta0 thalassemia gene, they cannot make any normal beta chains (hemoglobin A).
Diagnosis
Treatment
Lifestyle and Home Remedies
Coping and Support
Specialist to consult
Preparing For Your Appointment