Alpha-thalassemia

Living with

Is it risky for me to get pregnant if I have alpha-thalassemia?

During pregnancy women with alpha-thalassemia may experience more severe anemia. In the third trimester, increased rates of premature labor, preeclampsia and congestive heart failure have been reported.

References
  • Vichinsky, E. (2012). Advances in the treatment of alpha-thalassemia. Blood Reviews, S31-S34. http://www.sciencedirect.com/science/article/pii/S0268960X12700103
  • Origa, R., Moi, P., Galanello, R., & Cao, A. (2013). Alpha-Thalassemia. GeneReviews at GeneTests Medical Genetics Information Resource (database online). Copyright, University of Washington, Seattle. 1997-2013. Available at http://www.genetests.org. Accessed (2/29/2016).
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Does alpha-thalassemia affect certain ethnic groups more than others?

How can I meet someone else with alpha-thalassemia?

I had testing for alpha-thalassemia, and my doctor is not sure what the results mean. What should I do?

I have family members with alpha-thalassemia. Can I find out before I become pregnant if my baby might have alpha-thalassemia?

I had testing for alpha-thalassemia while pregnant in the past. Should I have testing again with each new pregnancy? Could the results change?

My child has alpha-thalassemia and is now afraid of the doctor. What should I do?

I was told I am a carrier for alpha-thalassemia and I would not have serious health problems. Is being a carrier a big deal?

I have a school-aged child with alpha-thalassemia. How can I help my child deal with having this disease?

My child with alpha-thalassemia is now a teen. How can I best handle the transition from childhood to adulthood?

What should someone with alpha-thalassemia be eating?

I was just told that I have alpha-thalassemia. But, before my doctor told me I was just low on iron. Should I continue taking iron?

My child has hemoglobin H disease, what can I expect at doctor appointments?

Does alpha-thalassemia affect certain ethnic groups more than others?

Alpha-thalassemia mostly affects individuals from Southeast Asia, the Mediterranean area, the Indian subcontinent, the Middle East and Africa. This includes the following populations: Italians, Greeks, Cypriots, Sardinians (Mediterranean region), Southeast Asians (Vietnamese, Laotians, Thais, Singaporeans, Filipinos, Cambodians, Malaysians, Burmese, and Indonesians), Chinese, Indians, Bahrainis, Egyptians, Africans, Middle Easterners (Iranians, Pakistanis, and Saudi Arabians), Transcaucasians (Georgians, Armenians, and Azerbaijanis), Romanians, Bulgarian and Albanians.

The form of alpha-thalassemia which results in hydrops fetalis is largely restricted to individuals from Southeast Asia.

References
  • The demographics of thalassemia. (2015). UCSF Benioff Children's Hospital. Northern California Comprehensive Thalassemia Center. Retrieved from http://thalassemia.com/Demographics.aspx#gsc.tab=0
How can I meet someone else with alpha-thalassemia?

Alpha-thalassemia is a rather common disease. It is possible there are local support groups. Genetic counselors and other health care providers would be able to provide you with information about local groups. There are also online support groups through which those affected and their families can meet. If there are no regularly held support groups in your area, state or national support groups may have events you can attend and meet others.

I had testing for alpha-thalassemia, and my doctor is not sure what the results mean. What should I do?

A genetics professional, such as a genetic counselor, can help you understand what your results mean and determine if further testing would be helpful to you. Genetic counselors can be found on the National Society of Genetic Counselors website.

I have family members with alpha-thalassemia. Can I find out before I become pregnant if my baby might have alpha-thalassemia?

You can find out the risk of having a baby with alpha-thalassemia before becoming pregnant. If you have not already been tested for alpha-thalassemia, you can meet with a genetic counselor who can arrange that testing. Your family physician may also order testing. Knowing as much detail about your family member's alpha-thalassemia will help with the test interpretation. Genetic counselors can be found on the National Society of Genetic Counselors website.

Your current or future partner can also have testing to determine the risk to future pregnancies. If you find that there is a risk, there are a few different options for you. Some couples decide they will still have children and want to know the risk so they will know what to expect. Some couples will choose to adopt instead of having biological children. Other couples may choose to have in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD), where embryos are grown in a lab and only those unaffected with the disease are implanted in the mother's womb.

I had testing for alpha-thalassemia while pregnant in the past. Should I have testing again with each new pregnancy? Could the results change?

If a person has alpha-thalassemia, that means there is a change to that individual's DNA, and that change will be present in every cell throughout the body. Once a person has been given an accurate diagnosis of alpha-thalassemia, this will not change throughout the person's life. Likewise, a person cannot develop alpha-thalassemia later in life. Therefore, it is not necessary to have testing with every pregnancy, unless your health care provider determines the original results need clarification.

However, if you are concerned for thalassemia in your baby, each new pregnancy has a risk. If you and your partner are each alpha thalassemia carriers, then each pregnancy has a risk for the baby having a more severe form of the disease. You can discuss prenatal testing with your obstetrician or a maternal fetal medicine specialist.

My child has alpha-thalassemia and is now afraid of the doctor. What should I do?

Some parents try making physician visits happy events by discussing it with their child, bringing special toys to appointments or planning a special outing for after the appointment. With age, children better understand why they are going to the doctor.

Suggestions can be found on the Thalassemia Patients and Friend support group forum: http://www.thalassemiapatientsandfriends.com/index.php/topic,4470.0.html

I was told I am a carrier for alpha-thalassemia and I would not have serious health problems. Is being a carrier a big deal?

Carriers of alpha-thalassemia will not typically have serious complications associated with the disease. However, there is the risk of having children affected with the disease. Carriers have changes in one or two of their HBA1 and/or HBA2 genes, the genes associated with the disease. Individuals with changes in three or four of these genes will typically have serious symptoms. If two carriers of alpha-thalassemia have a child, that child is at risk of inheriting the changed copies of the genes from both parents and having a serious form of the disease. It is important for couples to understand their risk before having children so they can make the decision best for them. Some couples decide they will still have children and want to know the risk so they will know what to expect. Some couples will choose to adopt instead of having biological children. Other couples will choose to have in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD), where embryos are grown in a lab and only those not affected with the disease are implanted in the mother's uterus.

I have a school-aged child with alpha-thalassemia. How can I help my child deal with having this disease?

School age kids with alpha-thalassemia begin to realize that they are different from their peers because they may need to go to the doctor more often and take medications their friends do not have to. To help children adapt to their emerging self-awareness, they can start making more choices about their own medical treatment, such as where an IV is placed. Children can be encouraged to start asking their doctor questions they may have about their disease.

Allowing opportunities for your child to socialize with other kids with alpha-thalassemia or other similar medical conditions helps them feel like they are not alone but are a part of a community. The Painted Turtle is a summer camp in California for kids with serious medical conditions, including thalassemia. The Painted Turtle

Contacting The Painted Turtle may provide information about other camps or groups available to you in your area.

My child with alpha-thalassemia is now a teen. How can I best handle the transition from childhood to adulthood?

The transition from childhood to adulthood is difficult for anyone. However, teens who also have a disease to manage can have a particularly difficult transition. Teens can understand the medical aspect of their disease. However, they may have a sense of invincibility from danger and may not be as compliant to treatment as they once were. There are a few things parents can do to help. This includes gradually handing over responsibilities to teens, including relationships and interactions with health care providers and negotiating these responsibilities with teens. Seek help and guidance from parents who have gone through this adjustment, and talk to your doctor about professional help if needed. Helpful information can be found online from the Northern California Comprehensive Thalassemia Center (living with thal transition

The Thalassemia Action Group is a national peer support network of patients that provide information on thalassemia. Teens can join to receive support. Contact info: (800) 935-0024 or (800) 522-7222 (e-mail: ncaf@aol.com). You and your teen could also subscribe to a listserv (thalassemia@listbot.com) or join an online support group.

What should someone with alpha-thalassemia be eating?

Patients with alpha-thalassemia must be conscious of the foods they eat and the nutrients they consume. People who do not receive blood transfusions are advised to avoid a high iron diet, drink tea with meals which decreases the amount of iron absorbed from food, and take a folate supplement.

Patients who receive transfusions are at risk of iron overload. Iron can accumulate in the heart and other organs, causing damage. These individuals are advised to consume a low iron diet. However, if iron load is well controlled by medication, this may not be as crucial. A dietician can provide tailored guidance as to the amount of iron that should be consumed per day. These individuals may still be anemic and crave foods such as beef. However, cereals and breads are a better choice to receive dietary iron. Foods such as tea, dairy and coffee can decrease the amount of iron absorbed. Juice enhances iron absorption.

Maintaining calcium levels is crucial for strong bones. The best sources of calcium are dairy products such as milk, cheese and yogurt. Alternative sources include calcium fortified orange juice, Tums antacid, broccoli and kale. Iron overload can lead to iron depositing in and damaging organs that are necessary to maintain strong bones. A dietician can provide guidance for adequate calcium intake.

Patients with alpha-thalassemia should avoid alcohol and tobacco.

References
  • Living with thalassemia. UCSF Benioff Children's Hospital. Northern California Comprehensive Thalassemia Center. Retrieved from http://thalassemia.com/nutrition-and-diet.aspx#gsc.tab=0
I was just told that I have alpha-thalassemia. But, before my doctor told me I was just low on iron. Should I continue taking iron?

Alpha-thalassemia and low iron can look alike. Most types of alpha-thalassemia cause the red blood cells to be smaller than usual, called microcytosis. Iron deficiency can also cause microcytosis, and is more common than alpha-thalassemia. Therefore, alpha-thalassemia is sometimes misdiagnosed as low iron and patients are prescribed iron supplementation. However, in alpha-thalassemia patients, this can cause iron overload and damage to organs. Consult with your doctor before taking iron. A consultation with a dietician can provide you with a tailored discussion of what foods and supplements you should consume and which to avoid.

References
  • The demographics of thalassemia. (2015). UCSF Benioff Children's Hospital. Northern California Comprehensive Thalassemia Center. Retrieved from http://thalassemia.com/Demographics.aspx#gsc.tab=0
My child has hemoglobin H disease, what can I expect at doctor appointments?

Treatment of your child will depend on the severity of symptoms. Patients with mild symptoms will visit the doctor about twice per year, but this will vary depending on symptoms and your doctor's recommendations. Symptoms usually start by age one, but for some, symptoms do not begin until adulthood. At doctor visits, several factors will be monitored. These include growth, development, possible facial bone deformities, dental status, enlarged liver and spleen, and hemoglobin levels. Bone density and liver iron should be monitored beginning in early adolescence.

References
  • Origa, R., Moi, P., Galanello, R., & Cao, A. (2013). Alpha-Thalassemia. GeneReviews at GeneTests Medical Genetics Information Resource (database online). Copyright, University of Washington, Seattle. 1997-2013. Available at http://www.genetests.org. Accessed (2/29/2016).
  • Standard-of-care clinical practice guidelines. (2012). UCSF Benioff Children's Hospital. Northern California Comprehensive Thalassemia Center. Retrieved from http://thalassemia.com/treatment-guidelines-20.aspx#gsc.tab=0
  • Vichinsky, E. (2012). Advances in the treatment of alpha-thalassemia. Blood Reviews, S31-S34. http://www.sciencedirect.com/science/article/pii/S0268960X12700103

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