Rachel

The fall edition of Dysautonomia News has been published! You can view the current newsletter, plus all older editions, here on our website: http://dinet.org/newsletter.htm

Thank you to all of our volunteers who made this newsletter possible!

Rachel Lundy

Hi Elish,

As far as I know there isn't a POTS awareness month. Having a Dysautonomia Awareness Month is relatively new.

DINET has always used blue for dysautonomia, which includes POTS. I don't think there is an official ribbon color for just POTS.

Rachel

Hello DINET Members,

October is Dysautonomia Awareness Month!

As a way to help spread awareness, I have created a few images for anyone who is interested. They can be used as facebook profile pictures, posted on facebook timelines, or posted on blogs.

If you are interested in using one of these images, you can find them here on DINET's facebook page: https://www.facebook.com/media/set/?set=a.726769044005025.1073741825.226087287406539&type=1

Happy awareness month!

Rachel

Thank you, everyone, for your kind words! It was an exhausting week, but I'm glad I could help. It's so nice to have our forum back!

Rachel

Only 3 more days until this support group meets for the first time! If you would like to receive the invitation, please send me an email.

Thanks,
Rachel

Dear DINET Members,

I am so sorry that the forum disappeared this week! It was quite unexpected. After being unavailable for three days, I am happy to say that the forum is back online!

There was a server issue that took some time to resolve. We've made some changes to the forum behind the scenes that should make things run more smoothly. Thank you for your patience as we worked through this problem.

I also want to thank Charlie Bray from Bray Industries for helping me this week. Charlie is building our new website, but he took some time away from that to help us with the more urgent issue of getting our forum back online. Thank you, Charlie!

Rachel Lundy
DINET President

Hi Janet,

Just send me an email, and I will forward the invitation to you. I hope you're able to go!

It Is Well with My Soul is one of my favorite songs. And it has such a compelling story behind it.

Rachel

Hello California DINET members,

There is a new support group in Los Angeles, California that will be meeting later on this month. The group is led by Dr. David Cannom and will be meeting at the Good Samaritan Hospital. They would like to invite DINET members in the area to join them.

If you live nearby and would like more information, please email me at Rachel@dinet.org. I will forward the event invitation to you.

Thank you,

Rachel

Thanks to everyone who sent pictures! You should have received a photo release via email. If you haven't received it, please email me at Rachel@dinet.org.

If you have received your photo release, but not signed it, please do sign and return the form if you want your picture to be used. We can't use pictures without a signed release.

Thanks so much!

Rachel

Thanks to those who have sent pictures! We still need 15 more. I'm extending the deadline out to August 14th.

We also still need some pictures of guys/men. So far we only have pictures of females. It would be great to be able to show a balanced picture through images of males and females of varying ages.

Thanks for your help!

Rachel

I have received a few pictures, but we still need about 20 more. If you are willing to share a photo or two for the website, please send me an email. Thanks!

Hello DINET Members,

Our new website is under construction! DINET needs your help with photos for the new site. We would really like to have pictures of dysautonomia patients. We need about 30 pictures. Do you have one or two that you would you be willing to share with us for the website?

You will need to sign an electronic waiver for us to use your image. We will not be posting names online, however. Only your picture will appear on the website.

If you are interested in sharing a picture or two for the website, please email me at Rachel@dinet.org. We would like to have all the pictures in by August 7.

Thanks so much!

Rachel Lundy
DINET President

It's a forum feature that comes disabled by default. We've always left it that way, so that's why it doesn't work.

Rachel

Please keep this in mind while posting. Thank you!

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

By the way, I was just at Mayo last month, and there were elderly people there in the autonomic department at that time.

I have never heard of a cut off age for autonomic testing at Mayo. That seems quite odd. I wonder if the person you spoke with was misinformed.

When I was at Mayo my husband spoke with the family of an older gentleman (70s maybe?) who was being seen in the autonomic department. He saw Dr. Fealey, just like I did.

Dr. Fealey mentioned to me that they do the sweat test (one of Mayo's autonomic tests) on elderly people. At 53 you certainly aren't old enough to be considered elderly!

I wonder if maybe there is a cutoff age for the 1 week POTS evaluation program that they do, but that you could get in to see one of the neurologists in the autonomic department. I know there were people there who were older than 50.

I hope that you will be able to find the help, testing, and treatment that you need.

It's hard to say because they are all good, very smart, best in their field, etc. Different personalities will click with different doctors. So if one patient doesn't click with a particular doctor, that doesn't mean that the doctor isn't good or that he/she should be avoided. Another patient may find that doctor to be his/her favorite!

I saw Dr. Fealey, and I really liked him. I haven't seen any of the other doctors in the autonomic clinic, so I can't speak from experience there.

I have been to all 4 of these hospitals, and I had a good experience at all of them. I think it is impossible to say which one is better than the others. Every individual is different. I have heard of good and bad experiences at all of those hospitals. It depends on why you are going, what you hope to get out of it, the doctors and techs you have, if you are able to find answers, etc.

I went to Johns Hopkins for POTS back in the 1990s. The doctor I saw back then is no longer at Johns Hopkins. I can't speak from experience about what it is like there currently. I've consistently heard great things about Dr. Rowe, but he is a pediatrician, so he only sees kids and teenagers.

I went to Vanderbilt in 2008. I went as an outpatient, and it was a good experience. The testing and doctors appointment only took one day, which can be an advantage if you are low on energy.

I have been to the Cleveland Clinic, but that was for mitochondrial disease, not for dysautonomia. I did have a good experience, though, for what it's worth.

I have also been to Mayo. They are very thorough in their testing, and for some people this can be beneficial. My doctor told me, however, that they are only able to find a cause for autonomic dysfunction in about half of their patients. So even with all of that testing, you may walk away without learning anything regarding a root cause.

Personally, I usually go to whichever hospital is the closest and accepts my insurance. I have moved around a lot over the last 15 years, which is why I have been to so many doctors and hospitals. I go to whichever one fits my needs and is closest to me at the time.

Hello DINET Members,

I want to let you know of a new feature on the forum that gives members the ability to change their own screen name. This is something we have received many requests about in the past. I'm happy to let you know that you may now change your own screen name up to two times. This will not change your log in name. It will only change the name that is displayed on the forum.

To change your username, please go into your settings. You can find your settings by clicking on your name in the black navigation bar that is at the top of the forum pages. Click on "My Settings." Next click on "Display Name." There you can type in the new display name that you want.

Please note that your old display name will still be available on your profile under "display name history." This is something that even an administrator can't change. If you ever need to change your display name for security purposes, please contact a forum administrator. We can help you delete your account and create a new one if need be.

Rachel

Guess what! I discovered a feature that now allows us to give members the ability to change their own screen name! You may now change your screen name up to two times. This will not change your log in name. That will remain the same. It will only change the name that is displayed on the forum.

To change your username, please go into your settings. You can find your settings by clicking on your name in the black navigation bar that is at the top of the forum pages. Click on "My Settings." Next click on "Display Name." There you can type in the new display name that you want.

Please note that your old display name will still be available on your profile under "display name history." This is something that even an administrator can't change. If you ever need to change your display name for security purposes, please contact a forum administrator. We can help you delete your account and create a new one if need be.

Thank you so much for sharing this video, Carrie! It is an excellent resource. I shared it on the DINET facebook page (https://www.facebook.com/DysautonomiaInformationNetwork), and it was a big hit there too!

For those who may not know, DINET also has a general informational brochure that you can download and print at home. The brochure link is found on our homepage, but here is a direct link: http://dinet.org/images/DINETservicesbrochure2.pdf

The brochure that Naomi is mailing out is one that was created specifically for doctors. It is a little more technical. This print-at-home brochure may be more appropriate if you are wanting to pass out brochures to friends and family.

DINET's mailing address recently changed. The address on the brochure is not current, unfortunately. I'm working on getting it edited. Meanwhile, our mail is being forwarded to our new address, and the forwarding will continue for 8 more months. I'm hoping that by the end of next week I will have an edited version of the brochure to put on the website.

Thanks so much for taking on this project, Naomi! We greatly appreciate it!

Rachel

Thank you for sharing about this study, Janie!

And thank you to Dr. Stewart for contacting DINET regarding this current research!

This is great, Kate! Thank you for sharing.

We often have people email us and ask about support groups. Would you be interested in having your support group listed on our website? http://dinet.org/supportgroups.htm If so, please send me a message with the details.

Thanks!

Rachel