gertie Posted July 4, 2009 Report Share Posted July 4, 2009 After reading posts I see I'm not the only one that doesn't have a lot of friends left. I realize I don't personally know anyone that has dysautonomia. I often wish there was someone who understood what I have gone through. I remember when I told my sister I had dys, she didn't even comment. I know she didn't know what I was talking about & didn't care enough to ask questions. She later told her family I had a brain disorder which I guess in a way is true, but in my neighborhood a brain disorder means you're nuts. Just curious if any of you personally know anyone with this illness. thanks. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 4, 2009 Report Share Posted July 4, 2009 I know several people with dysautonomia. One is the "undiagnosed" son of my co-worker. Several are diabetics. I've got a friend with MS that I "work-out" with. And then there are all my friends that I met here! Chronic illness is not uncommon, just unseen. Quote Link to comment Share on other sites More sharing options...
flop Posted July 4, 2009 Report Share Posted July 4, 2009 I know one person in my town with POTS - my doctor had told me that he had another patient with the same diagnosis so I searched internet groups till I found her and sent an e-mail.Have you joined the DINET meet others program?Flop Quote Link to comment Share on other sites More sharing options...
april abbott Posted July 5, 2009 Report Share Posted July 5, 2009 I know of one person with dysautonomia, she is the mother of my little girl's best friend. Other than that I haven't met anyone. I joined the "meet others" program here and tried to no avail to contact people in my area. After attempting to contact 3 different people in my area I gave up. I really don't know why you would join such a program if you have no intention of actually using it. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 5, 2009 Report Share Posted July 5, 2009 Ive met a few now with POTS. Some I can relate to quite well, but some have completely different symptoms and experiences to my own. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 5, 2009 Author Report Share Posted July 5, 2009 I've asked 2 docs in my town & one of them had never heard of dysautonomia & the other has heard of POTS but doesn't know anyone with it. I've been searching for someone with vasovagal syncope for many years. When I went to my first GI doc she had heard of it but didn't have any patients with it. My neuro knew what it was but offered no treatment. Thanks everyone. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 5, 2009 Report Share Posted July 5, 2009 I'm in Tucson with a doctor that has about 5 POTS/dys patients. I've met one so far, and she's very nice and my age. She's had this illness for 20 years, while I've only had it 2, so she's a good resource. She lives on the outskirts of the city, though, so it's hard to get together, especially with both of us sick off and on! Still, I chat with her by phone and email, FB.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 5, 2009 Report Share Posted July 5, 2009 This is from Wrongdiagnosis.com:Postural orthostatic tachycardia syndrome is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Postural orthostatic tachycardia syndrome, or a subtype of Postural orthostatic tachycardia syndrome, affects less than 200,000 people in the US population.I am willing to bet money that the actual incidence is more, but that is so often misdiagnosed or dismissed that we do not get classified correctly. Quote Link to comment Share on other sites More sharing options...
Tammy Posted July 5, 2009 Report Share Posted July 5, 2009 Yes, I'm always wanting to find someone who I'd get along with really well who also has similar symptoms as mine and is limited in their ability to socialize. However, I have yet to meet such a person. I'm scared to meet someone with POTS who is higher functioning because then I'd lose crediability because then people would wonder why they are able to do stuff and I can't. So I really am unsure what I want in the 'friend' department. Sometimes I'm too sick to care that I'm forgotten about, other times I feel fairly well, so than I feel bad about all that I miss out on. Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 5, 2009 Report Share Posted July 5, 2009 I do know a few people in real life with dysautonomia. One is my sister. One is a friend from highschool (the two of us met at church). The rest are people I have met on DINET and then become friends with in real life too.I know of others who are not on DINET and have dysautonomia. Either I have heard of them, they are a friend of a friend, or my doctor knows them, etc.Rachel Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 5, 2009 Report Share Posted July 5, 2009 I don't know anyone else with dysautonomia, I had started a post on here looking for anyone in the area........no one came back. Could be why doctors ask what dysautonomia is when I fill out a question sheet for their office. That's why this forum is so important for most of us, it's our only exposer to others with this. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 5, 2009 Report Share Posted July 5, 2009 Hi,I understand completely. I wish I knew someone else with this condition with whom I could have more personal contact. All of my friends are healthy with normal lives and it is hard for them to imagine what I go through every day. They are polite and keep in touch every now and then, but I often feel forgotten and our friendships are more casual and formal than they ever were before I developed this condition. I have gone twice... well, attempted to go twice - didn't feel well enough to stay the entire meeting either time... to a local autonomic dysfunction support group that I found out about. It looks like all of the members are in there 40's or older, where I am 27 years old, and none of them appeared to be feeling unwell, so I am not yet sure how much I will benefit from the group. Most days I don't feel well enough to interact with friends on any normal level, but it would still be nice to know someone else who could appreciate first hand the struggle that many of us go through just to survive each day.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 5, 2009 Report Share Posted July 5, 2009 I know of two women in my area that have POTS. I found one on this site and another from a chronic illness meeting I found at a local church. I also have a great friend who has a different chronic illness. Actually, it doesn't matter to me if they have dysautonomia or something else...just someone who can appreicate being ill and the difficulties we face. For that matter.....I do have a couple of friends who are not ill and are just so great. They don't underand but they try and offer me their support and admiration. I also get alot of support from my kids....they are only 15 and 11 but they understand more than anyone!I hae been dealing with chronic illness for years and they have seen a lot. I think it makes them more compassionate and appreciate life more. Erika Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 5, 2009 Report Share Posted July 5, 2009 after i got dx. my pc hired a medsec, who has pots. she had not known anything about pots before. she has learned a lot from both of us and dx. 4 more since me. i feel very. blessed. i always had wonderful care, but now it's even better as she knows i can't let anything not be put aside to the next day. while i'm there we share our symptoms and we go to the same cardio office, only see partners who are both fantastic. they have taken care of both of us. I hope one day make a luncheon date to really talk. . my cardio has about 15 pts. 2 of us have it pretty miserable. i gave her my name and # once but but she has little kids (if she only knew i was a preschool director at one time. we could help each other ). i guess a person has to be ready and she looked really down back then.one of my best friends has ms and we seem to have a a lot in common. even though she moved away we talk, email and she comes to visit me. we laugh as we both play charades trying to talk. lol! blessings and love~bellamia~ Quote Link to comment Share on other sites More sharing options...
flop Posted July 6, 2009 Report Share Posted July 6, 2009 I've recently met a new friend through a different website (not a health website). By chance we discovered that we are both the same age and both off work sick. Even though we have totally different illnesses and different difficulties we have got along really well. We met up for the first time 2 weeks back then I went to visit her last week (3 hours drive away). It is funny how there are just some people that you can feel really comfortable with and can share things with even though you have only recently become friends.My friend is ill and in hospital at the moment so I call and send text messages, I know that she would do the same if it was me in hospital.Flop Quote Link to comment Share on other sites More sharing options...
babettess Posted July 6, 2009 Report Share Posted July 6, 2009 I live in a very rural area and know of 8 people with a form of dysautonomia within a 80 mile radius of each other. This number includes my daughter and myself, another woman and her daughter with POTS, a man with POTS, a man with PAF, a young woman with NCS and a 12 year old with POTS. I have met the men, but not the other women yet. I am hoping to meet them all eventually. (Interestingly, I met the man with PAF at my neurologist's office which is about 3 1/2 hours away. He was there the same day as me and upon talking we found out we only live about 25 minutes apart. He travels the 3 1/2 hours every 3 months to see this doctor. )A friend of mine who works at our local hospital was talking with a nurse practitioner about me and how many other people in the area have a form of dysautonomia. The NP said that the CDC should be looking into our cases since the number is so high in our area compared to the total number of people in the area.I guess it really is a small world. Babette Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 7, 2009 Report Share Posted July 7, 2009 One of my sisters has been diagnosed with POTS and I have a friend with autonomic neuropathy (but her symptoms are pretty different other than fatigue our main symptoms are different).My specialist says that POTS is not as rare as believed--he believes it is under-diagnosed. Quote Link to comment Share on other sites More sharing options...
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