MomtoGiuliana Posted January 8, 2004 Report Share Posted January 8, 2004 Hi everyoneI'm just curious whether any of you know of other family members with autonomic dysfunction/POTS/NMH? I think I read somewhere that it is believed that POTS has a strong genetic basis, particularly from mother to daughter. I know of no one in my family (and I have 3 sisters, none of whom have had this problem) who has ever had symptoms like these (although I realize POTS, etc is under-diagnosed to unrecognized by most doctors).Thanks, Katherine Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 8, 2004 Report Share Posted January 8, 2004 No one in my family has any type of dysautonomia. I am the lucky one. Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 8, 2004 Report Share Posted January 8, 2004 I have POTS and I am sure my twelve yr old daughter has it. She goes to see a neurologist at Children's on the 23rd. I have heard of others who have children with it. There must be some kind of genetic connection!Dawn Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 8, 2004 Report Share Posted January 8, 2004 I think my father's mother's sister (is that my great aunt?) may have EDS & mild dysautonomia. She has the same long EDS fingers that I do and she looked very young all her life. She also complained that sometimes "her heart would run away on her". She had a sister that may have had dysautonomia as well. Her sister had the same "running away heart" when she was in her 30s. The doctors treated her with electric shock therapy. She had a stroke and died a week later. This happened about 50 years ago.I do have a sister who experiences pooling blood, especially when getting out of the shower. Like a classical EDS patient she can pull the skin on her face out very far (it looks really gross), as I can the skin on my back. But she is not hypermobile and doesn't seem to have "POTS".My other sister is very hypermobile but doesn't have any skin involvement and doesn't have POTS symptoms. So I think a genetic predisposition runs in my family, and that I was just hit worse than my other two sisters. They both have raynaud's and I don't.Michelle Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 8, 2004 Author Report Share Posted January 8, 2004 "She has the same long EDS fingers that I do and she looked very young all her life. "Michelle--what is EDS--I am also curious about this statement b/c I have very long fingers and people tell me all the time I look 20 although I am in my 30's (not a "symptom" I complain about!)"My other sister is very hypermobile but doesn't have any skin involvement and doesn't have POTS symptoms."I'm not familiar with these symptoms relating to POTS--can you elaborate further? Thanks! Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 8, 2004 Report Share Posted January 8, 2004 Sorry I did not elaborate....I was referring to Ehlers-Danlos syndrome. Some of us with EDS have long fingers and tend to look young. You should see Nina....she looks REALLY young! I didn't believe her when she told me her age.If you read this newsletter and this abstract you will understand the connection better.Take care,Michelle Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 8, 2004 Report Share Posted January 8, 2004 My 1st cousin (dad's side) has MVPS, a synonym for dysautonomia as she does not have any structural heart problems.Nina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 8, 2004 Report Share Posted January 8, 2004 Oh, Michelle...do I really look THAT young or is it just that I'm REALLY short? I just turned 39 a few week ago Ninaps. my picture is on my homepage, always linked below under "www" Quote Link to comment Share on other sites More sharing options...
pamyla Posted January 8, 2004 Report Share Posted January 8, 2004 Nina you do look young I have the long fingers too and I've also been told I look young. It's nice to have a benefit for once My dad is tall and skinny. He also has the long fingers, which currently have arthritis - ugh. My husband tells me that I even have the same walk as my dad, which he describes as kind of languid and flowy.I don't think my mom has EDS, but she's had problems with blood pressure, as my grandmother has also. Usually low, but then it goes high. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 8, 2004 Report Share Posted January 8, 2004 Nina, you look YOUNG. I wasn't saying that just cuz your short...LOL! When we met I thought you were in your 20s!Michelle Quote Link to comment Share on other sites More sharing options...
SLynn Posted January 8, 2004 Report Share Posted January 8, 2004 Dysautonomia has been a pretty common problem in my family for years. My twin sister has been treated and my father has also been diagnosed with dysautonomia. I believe there is a strong genetic connection! Quote Link to comment Share on other sites More sharing options...
justin Posted January 10, 2004 Report Share Posted January 10, 2004 my mom also had symptoms of dysautonomia. i think they started when i was in junior high and resolved within a few years. she says she eventually found some triggers (mostly caffeine) and by avoiding them she wasn't symptomatic anymore.so, yeah, i believe in the genetic link. i also have really long fingers...but, then again, i'm tall and skinny...so all of me is kind of long. but i don't have EDS. at least, i don't think so. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 10, 2004 Report Share Posted January 10, 2004 Good question and thanks for the tip on mother - daughter links. I have some real questions about my 7 year old daughter. She's real thin, small frame and tends to sit at the kitchen table with her knees up all the time. (Well so do I, but as I look back on these "habits" like sitting down in the shower etc. I think they stem from POTS.) I have several HR monitors etc. I may do some informal testing and then see if it warrents taking further steps. Quote Link to comment Share on other sites More sharing options...
geneva Posted January 10, 2004 Report Share Posted January 10, 2004 Exactly WHAT does looking young have to do with EDS? I'm not familiar with the condition but if you have to have something, I guess a symptom of looking young is not so bad! Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 10, 2004 Report Share Posted January 10, 2004 I don't think I have EDS because I definitly do not look young for my age and my fingers are short. however, I am hypermobile and my eight year old can fold herself in half backwards. It is pretty scarey looking.Dawn Quote Link to comment Share on other sites More sharing options...
ethansmom Posted January 10, 2004 Report Share Posted January 10, 2004 I also have the long fingers, and am tall and thin, and super flexible. Always have been. I don't know anything about EDS, but maybe it would be worth bringing up with my doctor- but I am, of course, a huge hypochondriac when it comes to this kind of stuff. I think I am always searching for answers as to where this POTS came from- and I really want to know more, but my doc is NOT an autonomic specialist and doesn't really want to put me through all kinds of testing- but I'm just not satisfied with not having answers- because I too believe in the genetic pre-disposition of dysautonomia. My grandfather has had unexplained episodes of passing out and rapid heart rate his entire life, and so did his sister. And my father swears he has CFS, and has allergies and lack of energy that sounds similar to mine when we talk about it. I just don't know, I wish I could find a doc who would test ALL of us!! Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Geneva,I did a little poking around on Pubmed and couldn't find anything about people with certain types of EDS looking younger...but a doctor did tell me that some EDS patients tend to look young. Maybe it has something to do with the very soft, baby-like skin?This website has some good EDS info. Michelle Quote Link to comment Share on other sites More sharing options...
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