If Long QT Syndrome is not showing up on the ECG and doctors recommend genetic testing, is Familion the only way to get tested? Are there any ways to help pay the costs? Should young children of SCA survivors be tested??
Thank you for any input, kim
To save one life is as if to save the world.
Long QT Sydrome
Tue, 01/27/2009 - 1:19pm
Tue, 02/03/2009 - 7:08pm
#1
Offline
Long QT testing
Hi Kim, Thanks for your inquiry. We understand that Familion is the only source for such testing. We are checking with experts on your other questions and will reply again shortly.
Mary
Fri, 02/06/2009 - 6:25pm
#2
Follow-up on your question
Hi Kim,
Familion is the only source for initial genetic testing for LongQT syndrome. The cost of the test is often covered by insurance and Familion can help with pre-authorization. As far as your children are concerned, experts, say they should get routine EKGs, but whether further testing is needed depends on the results of your testing. For more information about genetic counseling, you may wish to contact Nicole Johnson, ScM, CGC,
Genetic Counseling Staff, Department of Medicine, Division of Cardiology, Johns Hopkins University at njohnso5 [at] jhmi [dot] edu. To find a genetic counselor in your area, visit the National Society of Genetic Counselors "Find a Counselor" link at this website: http://www.nsgc.org.
I hope this is helpful.
Mary