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In Need of Genetic Testing
To broadcast how old I am, I was diagnosed with FA before the gene that causes it was discovered.
As a result, I am confirmed as having FA (my blood sample, along with my sister’s, were two of 16 samples used to identify the FA gene!).
One of the prereq’s for participating in a clinical trial is a genetic test. How do I go about getting one? What was your genetic test like?
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1 Reply
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After a few MRIs and other basic tests and my neurologist having a strong guess, I got a referral from my neurologist to meet and get a genetic test from a doctor specializing in genetics. He took 2 vials of blood and sent it out to a lab. A genetic counselor reached out to me with the results.
Ask a neurologist if they or someone else can take your blood and test it for FA.
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Matt that’s so cool omg. Like, REALLY cool. 🙂
Have you tried contacting the study team? I’m positive they could give you proof of your FA. They probably still have some of your blood in a -80 freezer lol.
Technology has definitely improved though and therefore if you just did a new test now they could actually give you your repeat numbers (instead of a presence/absence diagnosis). It’ll cost you though, even with insurance 😐 …Like Chris said you’d just need your neurologist to request it.
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