Fall 2005 Newsletter

[briarrose]

I just finished reading the 2005 Fall Newsletter. It's always way to short and I would love to read more Thank you to everyone that contributed.

The 2 things that kind of struck me and got me thinking were - The most Dysautonomia patients in any one state was Ohio. My question is how many people in other states now, originated from Ohio? Do you think there are more people with Dysautonomia from Ohio because there are doctor's there that recognize the symptoms and can diagnose it or ........

The second thing that I was curious about was the study from Germany. There is only 1 person listed from Germany so where did there tests subjects come from? Or do people from other nations just not know about this website yet?

[Guest Julia59]

I often wonder if it has something to do with the environment?----I have heard of a lot of MS patients also being from OHIO. But then again there are other states that have pesticides used in farming---Penn, NC, OH., Mich., Va., ----and so on.

It leaves a very big question in my mind anyway. Maybe the gene is already present-----then toxic exposure is a trigger. I think this is something that should be included in the research studies.

Julie :0)

[Sunfish]

first, thanks to katherine for doing the work on the member locales

i'm originally from ohio & now back in ohio, though there's a chance that i may have been counted as a marylander for the newsletter as that's where i was when the list/map was being compiled. looks like either way i wasn't needed to make the ohio numbers pretty hefty. geesh.

and unfortunately leaving ohio didn't help. i tried

re: germany though (and other countries for that matter), the language barrier is likely a big factor. most of our members are from english speaking locales. there are of course a few exceptions - those brillant folks who are fluent in more than one language even when it comes to medical jargon - but i'm guessing that's a big reason. i know that while i'm pretty decent at reading & rusty but formerly okay at writing french, i'd be way over my head if i tried to use it in a medical context.

melissa

[yogini]

Thanks for including the chart! I was surprised to see so many people in TX and CA. It looks like there is at least some correlation between population and number of members in each state. I think with these small numbers, though, a few extra people could really skew the results for any state. So hard to tell!

I think Sunfish is right about the Germany study. I think it is of POTS patients, but not necessarily DINET members.

[MomtoGiuliana]

Sunfish--thanks for the recognition. It was my pleasure to put the map together.

Regarding #s, I was also struck by the OH numbers--but I suspected it was due to the good autonomic doctors there. I think it is questionable to draw any conclusions from our distribution on the map, but it does raise interesting questions some of which will, hopefully, will be pursued in the future by research! One thing to keep in mind too is that TX and CA are large states with large populations. Might be interesting to determine ratio of # of members: state population size and then compare the ratios? We are talking such small relative #s however, that again, I think it is hard to make any conclusions. Also, have to consider how under-diagnosed our condition likely is, still.

Katherine

[Ernie]

Hi,

If we considered all my family members with the disorder it would change the data in Quebec. So far, there are 22 officially diagnosed and there are a lot more that are sick.

[katie_b]

I've always known of al ot of people from Ohio who have POTS. I think it's mostly due to the awareness and doctors here. It could aldo have something to do with the environment, though. In my county, over half the population has cancer. It's traced back to Philips (a factory) that sumped radioactive wastes.

Perhaps POTS has a similiar cause for many of the people in Ohio.

[Lukkychrm42]

Hehe when I go to see the doctor in Milan, I'll push the site for his English-speaking patients. )

[d4g7]

I'm from Australia (born in New Zealand) and don't understand your codes (TX, DA etc). I have never been to the US, and have never met anyone from Ohio, so don't know if that means that I shouldn't have POTS or what ???

[Guest Belinda]

I am from OHIO-MMMMmmm....all my life.

[michiganjan]

Since I am Michigan Jan, I must be from Michigan!

And I am.

But I was born and raised in Ohio.

So I am from Ohio, too.

[Dawg Tired]

Born in Illinois, moved to Arkansas when I was three. I was 43 and living in Montana when I got really sick. Now I'm back in the Ozarks, but Missouri this time.

[wareagle]

Hi all..it would be interesting if environment had something to do with this..I think it's probably a noticable "phenom" b/c of the doctors in the area. They have more knowledge and therefore more patients are dx. there..following this idea..more people are given info. regarding this web site by doctors who are familiar with it. I'm not sure I would have found DINET..at least not as quickly..if it were not for my doc. I was born in Louisiana..and grew up in TX..now in AL. I also agree that pop. densitiy has something to do with it. I really believe that there are many out there who have yet to be dx...and there may be some who simply don't know about this site OR have never registered and simply read the posts and get the support they need that way.

Hope you all had a great turkey day!

[Michelle Sawicki]

There are also close to 400 extra DINET members who do not participate in the Meet Others Program, and therefore were not included on the map. Some of those "extras" do not have dysautonomia, but have signed up out of curiosity or are medical professionals who want to learn more. As such, they were not included.

The map only reflects those members who joined DINET's Meet Others Program, so keep in mind that it is really not a true representation of all the dysautonomia patients out there.

Michelle

[briarrose]

Thx Michelle for Clarifying that. I pretty much figured that it wasn't a very accurate count of Dysautonomia patients. However, the early numbers in are quite interesting (kind of like an early return from an election)

I've often wondered about environment, mainly because some of the illness that have been around for a long time are affected by geographic location, environment, time of year a child is born; i.e. Lyme Disease, MS, CFS, Autism, etc. Some of these illness are still being investigated as to why there are so many in a concentrated area. Just good to keep an open mind I guess, anything is possible. Genetics are definitely a possibility to consider. I?m sure that when they unravel Dysautonomia they are going to find several factors.

I know that many people have never been to Ohio but there could be some factor there that is also in other locations. AND not everyone has the same type of Dysautonomia so it's pretty broad.

Katherine you did a great job on the map, you were included in my first paragraph, just didn't know who did what, sorry. I think, when they do a research study they should ask certain basic questions to find commonality. It is very broad in that they can ask thousands of questions and never turn up anything but at least they are looking. This isn't absurd in that they are doing it with other illnesses and turning up reasons, Lyme disease is kind of an example of this.

d4g7

The abbreviations are states, Tx = Texas.

Katie interesting about the Cancer, I'm so terribly sorry. A good Erin Brockovich story. There are those kinds of things all over the world unfortunately.

Ernie I didn't realize so many of your family had Dysautonomia. That is truly horrible. It must be a little easier getting support from your family since they are in your shoes. That's kind of how it is with me and my mom, she understands most of what I'm going through and usually doesn't put pressure on me about stuff.

Ok have to get out the door, it's going to be a long day. Take care everyone and keep an open mind

Steph