By LISA TSERING
indiawest.com
Indian Americans are at greater risk of contracting thalassemia than many other ethnic groups, according to a study by the Children’s Hospital and Research Center Oakland in Oakland, Calif. To coincide with International Thalassemia Day May 8, the hospital is urging the community to get tested — and to seriously consider banking their infants’ cord blood.
The rare and hereditary blood disorder can result in severe anemia. Children with thalassemia often require frequent blood transfusions and lifelong medical treatment.
Gargi Pahuja, a health care law attorney in New York, was diagnosed with thalassemia when she was 12 months old. “My parents were from India and they hadn’t heard of it,” Pahuja told India-West in a phone interview. “They were shocked to find that they carried the trait.”
Since thalassemia is so rare, some doctors are likely to confuse its symptoms, which include yellow skin, with jaundice. But thalassemia is a much more serious disease.
Thalassemia (also known as Mediterranean anemia) is an inherited blood disorder characterized by less hemoglobin and fewer red blood cells in the body than normal. Since hemoglobin allows red blood cells to carry oxygen, a deficiency leads to anemia, marked by fatigue, pale appearance, shortness of breath and weakness.
Pahuja is 35 years old, and continues to get blood transfusions every two weeks.
“The fact that I’m 35 is an important milestone,” she told India-West. “My parents were told that I would die by the age of 15 … my generation is the first to live into their 30s, 40s and 50s.”
The cause of thalassemia is defects in the genes that make hemoglobin. The only way to contract thalassemia is to inherit one or more defective hemoglobin genes from your parents.
Infants in California are required to receive a test for thalassemia, but California is the only state to require the test, said Pahuja.
Bone marrow transplant is the established treatment to cure thalassemia. Umbilical cord blood stem cells donated by a sibling have been proven to cure 91 percent of cases, according to a 2007 Children’s Hospital study of 40 children.
A Mayo Clinic statement said that most children with moderate to severe thalassemia show signs within the first two years of life. Prenatal testing is also available, at 11 weeks (chorionic villus sampling), 16 weeks (amniocentesis), and 18 weeks (fetal blood sampling).
“People need to be tested so that they can make informed decisions regarding family planning,” said Pahuja.
The Children’s Hospital study showed that in the United States, around two million people are carriers and that around 1,000 people have the full-blown disease. The hospital has one of the largest thalassemia centers on the West Coast, and currently treats around 300 patients.
In the U.S., there are more than 5,000 thalassemia cases, and those numbers are expected
to rise as the trait carrier population increases, said the study; in Alameda County alone, the Asian Indian population is more than 47,000 and has increased by 209 percent in the last decade, according to statistics provided by the Asian American Pacific Islander Health Forum.
According to Pahuja — who says she has devoted her professional and personal life to increasing awareness of thalassemia — people from North India are especially at risk. “If you are Punjabi, or Gujarati, or Sindhi, you need to get tested,” she told India-West. Individuals who are past child-bearing age need not get tested, she added.
In India, as many as one in eight people are believed to be carriers of the thalassemia gene, and in India, it is expected that 1 million people will have the disease in the next 40 years. Babies born there are 80-90 percent likely to die of the disease, said the Children’s Hospital spokesperson. But increasing awareness of the disease there has opened up a market for blood cord banking; a recent Mumbai Mirror article states that there are now three private stem cell banks — one run by Reliance in Mumbai; the CryoCell stem bank in New Delhi; and Life Cell, run in collaboration with Cryo-Cell International, U.S.A., in Chennai.
In India, it costs around Rs. 70,000 ($1,575) to preserve a newborn’s cord blood for 20 years. Here in the United States, the average cost is around $2,000.
6/11/10
Signs of Anemia in an Infant
By:Ashley Waters Gordon
Overview
Anemia is a common blood disorder in infants, affecting normal growth and development. The most common type in babies under two years of age is iron-deficiency anemia. With iron-deficiency anemia, the infant either does not get enough iron or cannot absorb iron. Lack of iron lowers the number of healthy red blood cells. These contain hemoglobin, which carries oxygen to organs and tissues. A growing baby needs this oxygen for organs to develop properly. Signs of infant anemia can be hard to see until the case is more severe, so have your baby tested at routine doctor's appointments. Call your infant's pediatrician right away if you notice any of the below symptoms.
Paleness of Skin, Lips and Nail Beds
Look for paleness in your baby's skin, lips or nail beds. Paleness tells you that not enough red blood cells and oxygen are circulating in your baby's blood. Some babies can even take on a gray or blue tone in very serious cases. You may not be able to notice paleness in infants until they have significant anemia, typically hemoglobin levels greater than 7 grams per deciliter (g/dL). Schedule an appointment for your baby to see his pediatrician if you notice paleness.
Growth or Developmental Delays
Pay attention to any delays in your baby's growth and development. These delays may be signs of anemia. Delayed growth and development can happen when the baby's organs, like the heart or the brain, do not getting enough oxygen to grow properly. Talk with your baby's pediatrician at his next appointment if you feel that your baby is not growing at the same rate or is not reaching normal developmental milestones.
Jaundice
Anemic babies can develop a condition called jaundice. You will be able to see jaundice when the infant's skin or whites of the eyes turn a yellow color. The buildup of a substance called bilirubin causes this yellowing. This happens when the baby's body breaks down too many old red blood cells, making a large amount of bilirubin. The baby's liver can filter out a normal amount of bilirubin each day. When there is a high number of red blood cells broken down and more bilirubin than the liver can handle, your infant's skin begins to turn yellow. Call your baby's pediatrician immediately if you notice any yellowing of the skin so that she can begin treating your baby's jaundice and anemia.
Rapid Heartbeat or New Heart Murmur
Pay attention to heart changes. When not enough oxygen is getting to your baby's tissues and organs, her body may compensate by raising her heart rate. The heart tries to pump more blood and oxygen to tissues throughout her body. Stress on the heart can cause a murmur. Ask the pediatrician if anemia could be causing your baby's increased heart rate or new murmur. If anemia could be the cause, have your infant's blood tested for anemia.
Decreased Appetite
Babies with anemia become tired easily and may be too weak to properly suck. If you notice your baby has a decreased appetite, begin taking notes of how often and for how long your baby nurses. Or, if your baby drinks formula, make note of the volume of formula your baby drinks at each feeding. Share this information with your pediatrician.
Excessive Sleeping or Fatigue
If your baby sleeps an excessive amount, call your pediatrician. This can be a sign of anemia. Because he does not have enough oxygen in his blood, an anemic baby may be too weak to play or remain awake for normal periods of time. Keep a journal of how long your baby sleeps in a 24-hour period. When your baby is awake, make notes on how active he stays. Show the pediatrician your notes to help diagnose and treat any possible anemia.
Irritability
Does your baby seem unusually cranky when she is awake? If she has anemia, your infant may be over-tired, or hungry but too weak to eat. This can make a baby become more irritable than normal. Ask your doctor if your baby's irritability maybe a sign of underlying anemia.
Overview
Anemia is a common blood disorder in infants, affecting normal growth and development. The most common type in babies under two years of age is iron-deficiency anemia. With iron-deficiency anemia, the infant either does not get enough iron or cannot absorb iron. Lack of iron lowers the number of healthy red blood cells. These contain hemoglobin, which carries oxygen to organs and tissues. A growing baby needs this oxygen for organs to develop properly. Signs of infant anemia can be hard to see until the case is more severe, so have your baby tested at routine doctor's appointments. Call your infant's pediatrician right away if you notice any of the below symptoms.
Paleness of Skin, Lips and Nail Beds
Look for paleness in your baby's skin, lips or nail beds. Paleness tells you that not enough red blood cells and oxygen are circulating in your baby's blood. Some babies can even take on a gray or blue tone in very serious cases. You may not be able to notice paleness in infants until they have significant anemia, typically hemoglobin levels greater than 7 grams per deciliter (g/dL). Schedule an appointment for your baby to see his pediatrician if you notice paleness.
Growth or Developmental Delays
Pay attention to any delays in your baby's growth and development. These delays may be signs of anemia. Delayed growth and development can happen when the baby's organs, like the heart or the brain, do not getting enough oxygen to grow properly. Talk with your baby's pediatrician at his next appointment if you feel that your baby is not growing at the same rate or is not reaching normal developmental milestones.
Jaundice
Anemic babies can develop a condition called jaundice. You will be able to see jaundice when the infant's skin or whites of the eyes turn a yellow color. The buildup of a substance called bilirubin causes this yellowing. This happens when the baby's body breaks down too many old red blood cells, making a large amount of bilirubin. The baby's liver can filter out a normal amount of bilirubin each day. When there is a high number of red blood cells broken down and more bilirubin than the liver can handle, your infant's skin begins to turn yellow. Call your baby's pediatrician immediately if you notice any yellowing of the skin so that she can begin treating your baby's jaundice and anemia.
Rapid Heartbeat or New Heart Murmur
Pay attention to heart changes. When not enough oxygen is getting to your baby's tissues and organs, her body may compensate by raising her heart rate. The heart tries to pump more blood and oxygen to tissues throughout her body. Stress on the heart can cause a murmur. Ask the pediatrician if anemia could be causing your baby's increased heart rate or new murmur. If anemia could be the cause, have your infant's blood tested for anemia.
Decreased Appetite
Babies with anemia become tired easily and may be too weak to properly suck. If you notice your baby has a decreased appetite, begin taking notes of how often and for how long your baby nurses. Or, if your baby drinks formula, make note of the volume of formula your baby drinks at each feeding. Share this information with your pediatrician.
Excessive Sleeping or Fatigue
If your baby sleeps an excessive amount, call your pediatrician. This can be a sign of anemia. Because he does not have enough oxygen in his blood, an anemic baby may be too weak to play or remain awake for normal periods of time. Keep a journal of how long your baby sleeps in a 24-hour period. When your baby is awake, make notes on how active he stays. Show the pediatrician your notes to help diagnose and treat any possible anemia.
Irritability
Does your baby seem unusually cranky when she is awake? If she has anemia, your infant may be over-tired, or hungry but too weak to eat. This can make a baby become more irritable than normal. Ask your doctor if your baby's irritability maybe a sign of underlying anemia.
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