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Hello Doctor Diana, I have been following your videos with interest and applaud the wonderful work you are doing while often feeling pretty terrible. I was diagnosed with EDS, Hypermobility in the Summer and so was my daughter. My niece and nephew also have EDS and we suspect many others in the family also. I wonder if you have come across any correlation between EDS and neural tube defects in your studies? I had a little girl who had anencephaly in 2010 despite the fact that I had been religious about my folic acid intake. My sister was separately diagnosed with low folates. I have been wondering if my EDS played a part in my little one’s anencephaly. I know that some people who have babies with anencephaly have the MTHFR gene which causes poor absorption of folic acid. I found one or two articles connecting the MTHFR gene with EDS, but nothing conclusive. I wondered if you had ever come across this issue in your research at any stage? Kind regards and continued success and good health to you and your family. Gerrie
Hello Doctor Diana, I have been following your videos with interest and applaud the wonderful work you are doing while often feeling pretty terrible. I was diagnosed with EDS, Hypermobility in the Summer and so was my daughter. My niece and nephew also have EDS and we suspect many others in the family also. I wonder if you have come across any correlation between EDS and neural tube defects in your studies? I had a little girl who had anencephaly in 2010 despite the fact that I had been religious about my folic acid intake. My sister was separately diagnosed with low folates. I have been wondering if my EDS played a part in my little one’s anencephaly. I know that some people who have babies with anencephaly have the MTHFR gene which causes poor absorption of folic acid. I found one or two articles connecting the MTHFR gene with EDS, but nothing conclusive. I wondered if you had ever come across this issue in your research at any stage? Kind regards and continued success and good health to you and your family. Gerrie
Hi Gerrie, Thank you for your kind words, and let me first express my sadness over your daughter. 🙁 I’m so, so sorry and share your grief. This is SUCH a good question and IS something I’ve looked into briefly. Do you have any MTHFR defects? Personally, I think some of us may NOT have defects in this pathway, but are getting ‘hung up’ in some of the details, where the answers are actually elsewhere. I’m sure you are aware of the genetic tests they like to check for when this occurs, and that’s a good one to start with. I know some of us have “tethered cords” which is also a form of a neural tube defect, but I believe it is MUCH rarer than many surgeons are claiming who perform this surgery. My research is taking me down a different road at this point, as to the cause of this when there are no defects in the MTHFR pathway. If you had your 23andme genetic testing done, please give me a holler! We may find answers there. At this point, I don’t have enough data to publish my thoughts (hence asking about your 23and me!), and unfortunately, I don’t believe there is anything currently in the literature on any official links with MTHFR and EDS. We need more researchers! Gentle hugs to you…
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