Michelle, I have an idea that MIGHT work

[danelle]

I was in the shower yesterday and came up with an idea

Would it be possible to write some specific info about POTS and dysautonomia in a letter, either along with personal accounts/stories or without, and have EVERYONE(that we can reach, that is) that has these illnesses or families and friends that are affected by it sign it-online or paper-and then send it off to as many tv shows, papers, magazines, etc. to get some recognition but more importantly get the public and medical field educated on what we go through?

I know that MANY of us have written to people individually but I wonder if it were a group effort if it would be more effective?

I will be glad to get this started or if there is someone out there with a great knowledge and wonderful writing skills that would like to help with the letter part, that would be great too. If not, I would be glad to take the time, do some more research, and get my brother's help-who is a journalist(excellent at that) get this thing going.

What do you think, is this an option, would it work? I am just willing to do anything to get the population educated about this and how it affects every aspect of our lives. THEN I will start with SSDI education-actually I am working on that too.

Let's get on with it and get something done! Please let me know what you all think.

Danelle

[Ernie]

Hi Danelle,

I would go for it. We certainly need to have the public and medical community informed about our condition.

Ernie

[Guest Julia59]

Danelle,

I think that's a great idea! I have written several letters to various media and one to our local congresswoman. The congresswoman is the only one who responded, and basically all she said is that she would attend the next conference if we had one.

Maybe this letter should be sent to Michael J. Fox as I think he is the only one with influence that can relate partially to what we deal with. People with parkinsons will at some point have to deal with ANS dysfunction.

It's pretty cool of you to bring up this idea again---as I know it's been brought up before. It's a positive way of getting people/medical professionals educated so perhaps one day the next person with dyasutonomia will not have to go through some of the horrific things we have been through or fallen witness to.

Speaking of a conference----it would be nice to see one here in Toledo, after all this is Dr. Grubb's home----and he is one of the Top autonomic specialists in the country. I'm not the best when coming up with ideas, but I am organized and the worker bee type---I get things done. Although i'm not able to work, with this I could move at my own pace, and I would be working with people who definately understand my illness.

We would need sponsors---- pharmaceutical companies-----medtronic---ect.

I know many pharmaceutical companies make a ton of money off us, and medtronic makes all kinds of devices that help us---pacemakers for hearts, for the abdomin for slow gut motility, and now they have one that controls pain. While they would help us finance the conference----we would be helping them to advertise.

Then of course we would have to see if all the Docs are willing to gather again, and hopefully have more of the latest research.

If we ever have another conference, I think this time there should be patient involvement--------patients telling their stories, trials, tribulations to the attendees of the conference. Or maybe just one person to read a letter with all our input, such as the one you talked about to the everyone there.

I have talked with a person here in Toledo who organizes conferences before. I would have to go find all the information she gave me. From time to time i'll get some information in the mail also.

I don't always have my thinking cap on so bear with me. These are just thoughts that have gone through my head. I would be willing to organize anything providing there are more interested parties.

The other day I almost threw out all the medical journals, research papers, pamplets----anything that had to do with dysautonomia----or chiari malformation/spinal disease. I was discouraged with the medical community altogether----and was feeling very down---------very much so.

Somehow, I made it through, but I still feel a little weary---and discouraged.

Please---does anyone have any input? What do you all think? We need to get something out there---and I think Danelle is definately on the right track.

I just thought a conference would be a good avenue to have this letter heard.

Julie :0)

[yogini]

Fantastic idea! I'd love to help in drafting the letter....

[morgan617]

I'm all for it. I don't have health, but I do have time on my hands to volunteer for non taxing things. I mean where I can sit most of the time. How stupid, we all need to sit most of the time, but hopefully you get my drift. I know a person here who works for a company that sells stuff to cardiologists here, maybe could get them involved. Who knows? I'm writing Dr. Phil today. About the impact of chronic illness on family dynamics. That would be a great show. If he likes to discuss the dynamics of obesity, he should be willing to discuss the dynamics of chronic illnesses. morgan

[Gena]

Danelle,

Briarrose (Steph) and I have talked about doing a very similar project as you suggested. I used to do some freelance writing and have sent out many query letters to various publications pitching article ideas. I have a book that lists all of the periodicals in the U.S. along with address, phone, etc.

Dannelle, I completely agree about using the personal stories. We would really like to use a personal story or two if we can get permission from a few folks, as this adds emotion and meaning to all of the medical jargon.

Anyone who would like to participate in this project is welcome! A good place to start spreading the message in the media and in the hospitals is right in your own hometown and state.

Perhaps we can develop two "standard" letters (one targeted toward medical staff and one for media) along with some basic info on dysautonomia/POTS and one or two stories that illustrate the hardships of getting diagnosed and living with dysautonomia.

If anyone has any medical info on dysautonomia that is already summarized and not too lengthy, please let me know. Otherwise I was going to try to weave some of the articles on potsplace.org and the NRDF site into a good overview. Steph, Michelle or Nina you guys may already have something like this.

Thanks for bringing this up Danelle.

Gena

[Michelle Sawicki]

Just an FYI...I am walking out the door right now but wanted to let you know I have read this post and will respond this evening or tomorrow at the latest.

Michelle

[morgan617]

Well I emailed Dr. Phil, man try to squeeze what you need to say in the alloted space. took me forever, but asked him to stand up and be a cutting edge force for us. We'll see. morgan

[briarrose]

Several times over the past 2+ years, I've emailed Dr. Phil, Oprah, 20/20, Primetime, Dr. Gupta, etc.....

But if everyone sends their stories then maybe we'll get somewhere.

I'm walking out the door and we'll have to read this post in it's entirety later.

[JLB]

Count me in. What do I do first?

FANTASTIC. Good thinking, Danelle.

[yogini]

I'd suggest that we put together a package including medical info and stories from a few people, maybe even pictures. That way, maybe they'd be less likely to ignore us...

[JLB]

I think the personal stories are a must.

[morgan617]

Absolutely, you have to put a face on it. That's the only way it hits home I think...morgan

[LindaJoy]

Hi, everyone. Just wanted to let you know, and this thread is a good place for it, that I got a call from the hospital in my town, where I sent the packet of POTS information, and they are doing two educational POTS sessions for doctors next year, one involving a talk by Dr. Grubb. I'm so excited. Dr. Grubb has already been booked. The doctors in Lima, Ohio, are very interested in this topic.

I'm also a writer--had to quit my job last week, but I still have the know-how, I guess--and am more than willing to help with whatever endeavor you all wish to pursue. I've thought of Michael J. Fox, as well, since he has Parkinson's. Has anyone seen where Cameron Diaz, since having her baby, has been experiencing memory problems? I'm thinking maybe POTS after childbirth? If so, maybe she would be a good one to approach at some point.

Just let me know what it is I can help with. I've pasted below the letter I wrote to the doctors in my area, just to give you an idea of what I said. If I can help write more letters like this one, let me know.

Dear Medical Staff at St. Rita?s Medical Center:

Enclosed, you will find information pertaining to the medical condition called POTS: Postural Orthostatic Tachycardia Syndrome, of which I am a sufferer. Dr. Fetnat M. Fouad, of the Syncope Clinic, at The Cleveland Clinic Foundation, recently diagnosed my condition.

While my diagnosis has been recent, my experience with the devastating, sometimes debilitating, symptoms of POTS has been ongoing for nearly 14 years.

During those 14 years, I had sought medical attention from many of the fine physicians in the Lima community, only to be told that my condition was psychological, not physical, leaving me with virtually no help at all to improve my circumstances. (A simple perusal of my ER records over the past years will give you an idea of my frustrating diagnosis history: anxiety, panic disorder, when it was really POTS.)

After so many years of debilitation, I sought help from a specialist at The Cleveland Clinic Foundation, who ran a Tilt Table Test. After only 7 minutes, the test showed, conclusively, that I suffer from POTS, a physical condition.

Two weeks later, I returned to The Cleveland Clinic for further testing, in an attempt to determine the cause or causes of my POTS condition. My tests showed low blood volume, extreme venous pooling and rapid circulation (possibly due to hyperadrenergic response).

Because research into POTS has truly just begun (see information from the National Dysautonomia Research Foundation, located at www.ndrf.org), the exact causes of POTS, even through current testings, are more speculation than science. I may never know what exactly caused my POTS condition, although I did begin with major POTS symptoms after experiencing a severe virus. What I do know is that my condition is real, as are thousands of other patients? POTS conditions, which need to be heard, properly diagnosed and cared for.

That?s why I?ve put together the enclosed packet of POTS information, mostly from the Dysautonomia Information Network, found at www.potsplace.com, that relies heavily on Dr. Blair Grubb?s research. Dr. Grubb is a cardiologist from Toledo MCO and is one of our nation?s leading authorities on POTS.

Armed with education, more and more medical specialists in our community will be able to properly treat their POTS patients, restoring in these sufferers a better quality of life.

Because the information I have on POTS is extensive, I?ve included, in this package, only those reports I found to be the most direct and informative. I will include, below, other websites, should you wish to further research POTS, that I have found to be useful, as well.

I?ve also enclosed, in this packet, my Tilt Table Test report, so that you can see how a POTS patient responds to long-standing. Mine is a typical response in POTS patients.

As you can see from the enclosed material from potsplace.com, POTS not only affects one?s ability to stand or sit for long periods of time, causing dizziness, brain fog, anxiety response, blood pooling and syncope, but so many other symptoms accompany POTS, as well, many symptoms that resemble anxiety or panic disorder. Please, keep in mind, POTS patients do experience anxiety, but as a secondary symptom to a primary physical condition.

As a physician who cares about his or her patients, I do hope you find the enclosed information to be helpful in working with your POTS patients to improve their qualities of life.

Should you have any questions about POTS, from a patient?s perspective, I would be more than happy to answer any questions you may have.

Thank you for the time you?re taking to research POTS. I look forward to hearing from you.

Sincerely,

Linda Parsons

Please feel free to access the following websites for further reading on POTS:

Dysautonomia Information Network

www.potsplace.com

 If accessing this site, please be sure to enter the FORUM, where you can read threads from POTS patients around the world! I am a member of this FORUM. The information POTS patients have about their condition is extensive and could be quite helpful to you in your research.

National Dysautonomia Research Foundation

www.ndrf.org

?Postural Orthostatic Tachycardia Syndrome: Patient?s report on causes, symptoms and treatment?

http://home.att.net/~potsweb/POTS.html

*Written by a POTS patient. Very informative. Quite extensive research.

Vanderbilt University Autonomic Dysfunction Center

www.mc.vanderbilt.edu

National Institute of Neurological Disorders and Stroke

www.ninds.nih.gov

?About Dysautomia?

http://heartdisease.about.com/cs/womensiss...autonomia_p.htm

* Written by Dr. Richard N. Fogoros

Thanks, everyone, and please let me know how I can help get the word out about POTS.

Linda Joy

[danelle]

All the replies have been amazing. I am sorry I am having a very POTSy spell right now but will catch up with you all tomorrow and respond (haven't been able to read responses-but wanted to "check in"). SOrry!

Danelle

[Guest Julia59]

Linda,

I'm just a couple hours away from Lima in Toledo. What do you think about a conference?

I would love to help in any way I can. At one point we had a local support group here in Toledo. We had a leader, but she is no longer able to run the group due to many other responsilities and her husband also has dysautonomia. I was the coordinator.

Please feel free to e-mail me--at julia59@buckeye-express.com

Julie :0)

[Michelle Sawicki]

Hi guys!

I've read all your posts, and I love to see you fired up about educating both physicians and the public. If you read our newsletter you know Valerie Fenston will soon be mailing educational brochures to physicians around the country. Dr. Stewart (one of our medical advisors and a lead investigator in dysautonomia) proof-read the brochures and offered some fabulous suggestions.

We have another person who will be contacting top dysautonomia physicians to obtain publications we can use for an educational mailing packets. The packets, as well as the brochures, will take money to duplicate and mail. I love your ideas, but as we are taking on two new projects that will take our time, energy and money, I don't think it is wise for us to take on a third project at this time. Also, our funds are limited. However, this is something we can probably do in the future, provided we have enough volunteers and funds. I do think the projects we are currently focusing on will help to achieve what many of you have expressed a desire to do: educate others about dysautonomia.

As for a conference, they are mighty expensive. Dan Smith from NDRF told me their last conference, which was very nice, cost over $100,000. We could have a scaled down conference, but it still would cost thousands of dollars. I have been told that most funders will not fund conferences. Still, there are some who will. If any of you would like to help with grant research/writing, we would be happy to have you aboard.

Sincerely,

Michelle Sawicki