Clairefmartin Posted May 6, 2012 Report Share Posted May 6, 2012 Someone started a group on facebook where you can look up others in your state with Dysautonomia, here is the link:https://www.facebook.com/groups/dysautofriendfinder/I found a bunch of people locally that I had no clue existed!Thought I would share.xoxoClaire Quote Link to comment Share on other sites More sharing options...
corina Posted May 6, 2012 Report Share Posted May 6, 2012 hey, that's cool!~thanks for sharing Claire! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 6, 2012 Report Share Posted May 6, 2012 You may want to let Montie know about it. He was looking at starting a support group...don't know whether it was cyber or physical group, though! Thanks I already knew from another site on Face book, thanks Quote Link to comment Share on other sites More sharing options...
diamondcut Posted May 8, 2012 Report Share Posted May 8, 2012 Do you know if there is anything like that for on the UK?Out of interest because i am new on here, what is the ration of nationalities? Does anyone know? Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 9, 2012 Report Share Posted May 9, 2012 You may want to let Montie know about it. He was looking at starting a support group...don't know whether it was cyber or physical group, though! Thanks I already knew from another site on Face book, thanks I'm on it, thanks! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 9, 2012 Report Share Posted May 9, 2012 Good, I meant to PM you about it, Montie. Quote Link to comment Share on other sites More sharing options...
llcsmom Posted May 9, 2012 Report Share Posted May 9, 2012 I will have to check out the site. Thanks, Claire.We (my daughters and I) have been going through such a rough time lately, that I have seriously considered trying to start up a local support group or groups. My daughters both have dysautonomia and I have "related health issues". I also suffer from being a parent (and a nurse) and having my heart broken on a regular basis, thanks to how this disorder has affected my kids and their lives. Dysautonomia is different from say, diabetes, arthritis,etc that kids may have. It is such a mystery at times, with so much of the body and organs involved, each day is like a rollercoaster ride. You never know what is coming next, you've tried about 20 different medications, and nothing seems to help. You've tried physical therapy, accupuncture, one thousand doctor appointments, one hundred tests, and nothing helps except to get the diagnosis with autonomic nervous system testing. So, even as a nurse, I have had my really low days, believe me, as a mom seeing my older daughter go through this for 5 years since she was 10, and now my younger daughter, age 10...why do they both have to have this in their lives? My 15 year old somedays looks like the 80-90 year oid patients I take care of.I am thinking... one group for the parents and one for the "kids", or something like that. All of the internet support is wonderful for this disorder. However, I think if people could meet in person, even if it is only a few times a year, it would be so helpful and supportive.There is an "adult" support group in Milwaukee, so occasionally I have brought my older daughter to a meeting. We have met others in the area, thanks to that support group, but now I am thinking of something that applies more to parents and kids/teens.We know about 6 families within 2 hours or less driving distance that are affected by dysautonomia.If anyone has any ideas for me or would like to help be brainstorm... I will start working on this as soon as the girls are done with school for the year, and maybe get something going by July.We live in the Milwaukee/Waukesha area of Wisconsin, if anyone is interested or you have any suggestions for me. You can send me a personal message too.Thanks!Dawn Quote Link to comment Share on other sites More sharing options...
corina Posted May 10, 2012 Report Share Posted May 10, 2012 Diamondcut, I know of a forum in the UK that has meetings as well. The meetings are in Bristol, not sure if you're close. I'm in the Netherlands and my dad lives in the UK (Cornwall) so I hope one day to attend a Bristol forum meeting and combine it with seeing my dad! Feel free to Pm me if you'd want more info! Quote Link to comment Share on other sites More sharing options...
corina Posted May 10, 2012 Report Share Posted May 10, 2012 Oh and I also heard that there will be a STARS meeting in Birmingham (if I remember well), they also have a forum. Not that WE would like to loose you but you might like/be able to attend the meetings! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 10, 2012 Report Share Posted May 10, 2012 Where in Birmingham, Corina? That's where my doctor's are...I could maybe make my doctor's appointments around the meetings! I'm wondering about getting a group started in Huntsville, AL., but don't even know where to begin?! Quote Link to comment Share on other sites More sharing options...
corina Posted May 12, 2012 Report Share Posted May 12, 2012 Ohhhh Kimbellgirl, I meant Birmingham UK! Sorry for the confusion! Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 12, 2012 Report Share Posted May 12, 2012 anyone can join my facebook from here, Montie Hardman. Just send me a message your from dinet Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 12, 2012 Report Share Posted May 12, 2012 Oh Corina that's too funny. Worlds away yet connected...lol!! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted May 12, 2012 Report Share Posted May 12, 2012 Oh Montie. I'll friend you on FB!! Quote Link to comment Share on other sites More sharing options...
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