Darlene Posted August 6, 2012 Report Share Posted August 6, 2012 http://forward.com/articles/7940/treatment-seen-for-familial-dysautonomia/ Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 6, 2012 Report Share Posted August 6, 2012 That's a really great break through! Quote Link to comment Share on other sites More sharing options...
issie Posted August 6, 2012 Report Share Posted August 6, 2012 This is so wonderful. Even though this type of dysautonomia is different than what most of us have - it's so great for them to find something to help with the symptoms. It really gives us hope that the research in epigenetics will come through for us. Basically, they figured out a defect in a gene causing this and found something to tweak the mutation. If they come up with a way of changing the alleles - that will be awesome. It could be something so simple as how our body process proteins or something like that. If they can find a common mutation in our genes and compare this - we might get more answers. Just looking into methylation pathways and discovering mutations there - could make a huge difference in how we feel. We can figure out how our body is using certain supplements, foods and medicines. Once, we know where the defect is and avoid those things and/or work at over coming the defect - then we may get somewhere.Issie Quote Link to comment Share on other sites More sharing options...
jangle Posted August 6, 2012 Report Share Posted August 6, 2012 Welp, might as well try it Quote Link to comment Share on other sites More sharing options...
issie Posted August 6, 2012 Report Share Posted August 6, 2012 Welp, might as well try itMight as well, cause we try everything else. Ha!Ha! But, hate to tell you I've been on it for years and it hasn't helped my dysautonomia - hasn't hurt anything - but, can't really tell that it's helped. I wonder how much they took of it. I would be interested to know - maybe, more would be better. Of course, I have been able to deal with my autonomic disorder by using alternative supplements for many, many years - just in the last 5 years have I searched out meds. So, I do believe - it may be something simple that is yet to be discovered. I rather try alternative things and experiment with those - our body will recognize them better then synthetic meds.Issie Quote Link to comment Share on other sites More sharing options...
Mytwogirlsrox Posted August 6, 2012 Report Share Posted August 6, 2012 Wow awesome news! Getting closer for us Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 6, 2012 Report Share Posted August 6, 2012 Used to have a little patient with this at Duke Medical Center, years ago. I loved her...I know, as a nurse you aren't supposed to have favorites, but she was one of mine. This is wonderful news Quote Link to comment Share on other sites More sharing options...
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