Thalassemia Patients and Friends

Discussion Forums => Thalassemia-related Issues => Topic started by: Danielle on February 20, 2006, 09:24:52 PM

Title: T2* Testing
Post by: Danielle on February 20, 2006, 09:24:52 PM
T2* Testing (http://www.cooleysanemia.org/sections.php?sec=2&tab=12&sub=202)

Individuals with thalassemia major and intermedia are at significant risk for developing complications due to iron overload. Iron related heart problems are the most dangerous complications of iron overload.

As part of their comprehensive care, patients should undergo cardiac evaluation tests in order to determine if there are any heart function abnormalities that have developed due to iron overload. However, until recently there was no method to specifically measure the amount of iron deposited in the heart.

Now, thanks to a new technology called “T2*” (pronounced tee-two-star), the degree of iron overload in the heart can be determined.

T2* is a time measurement that reflects iron content in tissue. The T2* measurement is obtained from images taken on a standard Magnetic Resonance Image (MRI) machine.

At present, T2* testing is being conducted only in Los Angeles and Boston. T2* testing is available for all patients with a diagnosis of thalassemia major or intermedia who are 7 years or older. Because the testing is part of a research study, testing will be done free-of-charge. For safety reasons, patients who have pacemakers are not eligible for T2* measurements, but Port-a-Cath’s, other intravenous catheters, and surgical clips are safe and do not affect the image. Additionally, because the T2* must be done in a closed MRI machine, patients who suffer from claustrophobia are also ineligible for testing.

If you are a thalassemia patient or a parent of a child with thalassemia and are interested in having the T2* measurement, first get permission from your hematologist. If you wish to be tested at Childrens Hospital Boston, call kelly Walsh at 617-355-2797. To be tested at Childrens Hospital Los Angeles, please email info@cooleysanemia.org with the name of the patient, age, diagnosis, contact information and dates available to have testing done in Los Angeles. Interested parties can also call Patient Services at 800-522-7222. Testing is available year round and appointments can be made according to the patient’s availability. Keep in mind that patients and their families must make their own travel and lodging arrangements.


To Arrange for T2* Testing
In Boston:
Kelly Walsh,
617-355-2797

In Los Angeles:
CAF Patient Services,
800-522-7222

Click here (http://www.cooleysanemia.org/sections.php?sec=2&tab=10&sub=204&node=204) for more information about the T2*.


**Taken from www.cooleysanemia.com**
Title: Re: T2* Testing
Post by: dee_thal on April 10, 2006, 08:46:30 PM
Just wanted to give everyone an update on my experience with the T2* testing. I got an appointment for March 28 at the Children's Hospital in Boston. Getting the appointment was no hassle, and everything there went relatively smoothly. I did request the appointment about a month ahead of time though. The process takes about 45-60 minutes. They put you in a large MRI scanning machine which can be a little claustrophobic, but I didn't have much trouble with it. They require you to do breathing routines where you breathe in and out, and then hold it for 10-15 seconds. You have to do this a good 20-25 times, and it gets a bit exhausting. Other than that, it is a simple process. My reports arrived within a week. I have not met with my local doctor here to discuss them yet, but from what I can understand of the medical terminology, there are a few small iron deposits in the heart, but overall heart functioning seems normal. They also measure deposits in the liver.

I encourage everyone to get the test done if you happen to be in the Boston or LA area.