Cooley’s Anemia Foundation to Appear on The Balancing Act’s “Behind the Mystery” on Friday, May 16th

May 15, 2014

Thalassemia – A Lifetime Of Transfusions. Most Thalassemia Trait Carriers Don’t Know It. Join The Fight Against Thalassemia.

Make sure to tune in to The Balancing Act on Thursday, May 8th and May 15th, 2014 at 7:00 am (ET/PT) on the Lifetime Channel as Amy Celento from the Cooley’s Anemia Foundation, and mom to a child living with the condition, discusses Cooley’s anemia. 

Cooley’s anemia, or thalassemia, is a genetic blood disorder that can be fatal if not treated early.

Originally thought to affect mostly people of Mediterranean heritage, people from many other backgrounds carry the trait. So how can we find out if we carry the trait?

Amy Celento of the Cooley’s Anemia Foundation joins us and details how doctors can review results of regular and routine blood tests to see if you are a carrier. It’s important medical information you don’t want to miss.

The Silent Trait

Thalassemia, or Cooley’s anemia is a serious, genetic inherited blood disorder. Most people who carry the thalassemia trait are completely unaware of it.

Two people who both carry the trait have a 25% chance WITH EACH PREGNANCY of having a child with a severe form of thalassemia. 

o Thalassemia is a genetic blood disorder that is fatal if not treated early.
o Treatment for severe cases is lifelong blood transfusions & difficult daily drug treatment.
o A Bone marrow transplant can provide a cure, but only for select recipients (although advances are expanding that list of recipients).
o Gene therapy trials, in early stages, show promise for a cure as well.
o The Cooley’s Anemia Foundation is the only national non-profit dedicated solely to thalassemia issues.

Patients with this disorder have hemoglobin that is deficient in proteins that help red blood cells carry oxygen. This means the right amount of oxygen does not get to their organs resulting in the need for regular blood transfusions; in severe cases, the need for transfusions is every 2-3 weeks in order to have hemoglobin to sustain life.

But there can be big challenges with the regular transfusions. When blood transfusions are received, a lot of iron is going in with the blood. Since the body has no natural way to eliminate iron this extra iron will cause iron overload. Iron overload can be very dangerous and can damage the heart and liver as well as many other organs. 

People from certain regions of the world or who are descended from them may see a prevalence of the trait: the Mediterranean (Italians and Greeks), South and Southeast Asia, China, northern Africa and the Middle East. Testing is very important if your child has genetic ties to one of these regions. The earlier the disease is found, the faster treatments can be started.

The good news is you can find out if you have the trait through simple and routine blood tests; knowing if you carry the trait helps you when making family planning decisions. And thanks to advances in treatment, people who are born with a severe form of thalassemia can now lead longer, fulfilling lives.

**ApoPharma provided a grant for this segment


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