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I may be in a gene therapy clinical trial

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SsupernovaE

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So I'm being evaluated as a potential candidate for gene therapy for Charcot Marie Tooth disease. I don't know many of the details, but gene therapy scares me. I've heard of runaway cancers and fatal immune reactions to previous attempts. IF I pass the screening, there's only about a 5% chance that I'll be included.

This is potentially the biggest decision of my life. Should I go for it if given the chance?
 
Originally posted by: SsupernovaE
So I'm being evaluated as a potential candidate for gene therapy for Charcot Marie Tooth disease. I don't know many of the details, but gene therapy scares me. I've heard of runaway cancers and fatal immune reactions to previous attempts. IF I pass the screening, there's only about a 5% chance that I'll be included.

This is potentially the biggest decision of my life. Should I go for it if given the chance?
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Others in your family have the disease?
 
Link the OP forgot to include.

Is it greatly affecting your life? I'd go by how much it interferes in day to day stuff.
 
Originally posted by: moshquerade
Originally posted by: SsupernovaE
So I'm being evaluated as a potential candidate for gene therapy for Charcot Marie Tooth disease. I don't know many of the details, but gene therapy scares me. I've heard of runaway cancers and fatal immune reactions to previous attempts. IF I pass the screening, there's only about a 5% chance that I'll be included.

This is potentially the biggest decision of my life. Should I go for it if given the chance?
Click to expand...
Others in your family have the disease?
Click to expand...

Not that I'm aware of; but that is one of the factors I believe.
 
what are they going to do with you exactly? "Gene therapy" is a really ambiguous term. Might as well say they're going to perform "medicine" on you
 
Originally posted by: Mo0o
what are they going to do with you exactly? "Gene therapy" is a really ambiguous term. Might as well say they're going to perform "medicine" on you
Click to expand...

You're right, I have no idea. I'm meeting with a neurologist and genetic counselor in two weeks to discuss the details.
 
very interested in this. Keep us posted. But I agree with others that it is something, at this stage in development, that I would only consider as a last option. Depending on the severity of the disease and how detrimental it is to your daily life.

I'm a big supporter of gene therapy, but much of it is still quite new. Of course, it would go nowhere without trial volunteers.
 
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