So Excited!

[SunsetParadise49]

I hope this is the right place to post this.

Last night I emailed a friend who goes to our church who happens to be a newspaper columnist and he said he would be thrilled to interview me and help raise awareness on Dysautonomia!

I also emailed a doctor who appears on our local news at least once a week and told her about Dysautonomia...so maybe I'll have even more success raising awareness.

I'm so happy!

Gwendolyn

[Mrs. Burschman]

Congrats! Keep up the good work!

Those of us who work at newspapers often like to include Web links where people can get more information when we write columns or stories. So you might want to write down DINET's address for people to check out if they want to know more.

Amy

[pat57]

awesome

[MomtoGiuliana]

Great idea!

[SunsetParadise49]

Yep, I'm going to have him include DYNA and DINET. He also just emailed me and said that he want to interview my mom from her perspective of things.

[Guest tearose]

This is a wonderful development!

Thanks for your part in making this happen!

tearose

[runningshoe]

I've emailed the Oprah show twice. I think it would be great if she would add it into one of her health shows. I guess it is time to email her again. Good luck with your interview!

[bkweavers]

I've emailed the Oprah show twice. I think it would be great if she would add it into one of her health shows. I guess it is time to email her again. Good luck with your interview!

I've also emailed the Oprah show about autonomic disorders and I was considering doing it again! Maybe if we all started flooding her email with letters, she'd do the show. There is such a need for people to know about these disorders, especially the medical community! Hope your interview goes well!

Brenda

[BEE]

I will do it too

[SunsetParadise49]

I got a response from the dr. I emailed who appears on the local news....see what you think of her reply....

Dear Gwendolyn,

Thank you for your e-mail to me. I am familiar with the medical condition dysautonomia, as I actually have a family member who has been diagnosed with it. I will take your suggestion to make the public more aware of it under consideration. I sincerely hope that you continue to stay active in your advocacy efforts in this work. I am certain that there are many people who can benefit from this information and congratulate you on the work that you are already doing. Best wishes! Wanda D M.D.

What gets me is, if she has a family member with Dysaut. why wouldn't she have already done something about it? Now, I don't know how bad her family member has it, so maybe Dysaut. doesn't effect his/her life as much as it does others. Hopefully she will consider it though!

[Mrs. Burschman]

My first thought is that maybe a relative was diagnosed with it, but this doctor thinks her relative is just a psych case.

I know that's a bad assumption, but how many of us have heard that?

Amy

[SunsetParadise49]

My first thought is that maybe a relative was diagnosed with it, but this doctor thinks her relative is just a psych case.

I know that's a bad assumption, but how many of us have heard that?

Amy

Maybe. I know that a lot of times that happens until they find just the right doctor.

[yogini]

Maybe the dr doesn't like the relative or maybe he didn't get approval from the network to air a story. I applaud you for your initiative in trying to increase publicity for dysautonomia. We are eagerly waiting to see the article!

[SunsetParadise49]

Maybe the dr doesn't like the relative or maybe he didn't get approval from the network to air a story. I applaud you for your initiative in trying to increase publicity for dysautonomia. We are eagerly waiting to see the article!

I noticed that she also sent her response to my email (which my email to her was still there) to the production company so I think there's still hope. I can't believe tomorrow is the interview!! And I feel like crud today...I have a follow up appointment today with the family doctor so I am crossing my fingers it's not back to the hospital like last week!

[ajw4790]

That is cool!!! Good luck with it! Let us know how it goes!

[flop]

Well done, it is so important to educate the public and doctors about dysautonomia. Work like this publicising POTS and other disorders is hard work but very rewarding and ultimately should benefit all of us.

If you get a chance it may be helpful to look through the main part of the DINET website and make some notes about common symptoms / treatments etc. You could also give the reporter the DINET web address so they can check any facts and follow up the evidence, as most of the info on the website is backed up by medical journal references.

Good luck, take the usual advice of get a good night's sleep, drink plenty of water and make sure you have had something to eat - hopefully that will help to minimize any POTS symptoms. If you are feeling bad just explain to the reporter - you could even recount exactly how you are feeling at the time.

Flop

[Rachel]

How did the interview go? That's exciting that you had this opportunity!

Please share the article when it comes out!

Rachel

[Maxine]

Good for you,

Thanks for advocating for us---

I have been writing media, different medical corporations, and doctors for years.

I only heard from the president of a hospital once, and another person who work for a medical corp. who basically told me they don't know much of anything about dysautonomia, and she didn't think that they were going to do anything about getting awareness out there.

Kind of rude, don't ya think----???

I'm taking a break for a while........

I'm glad you got a response------glad for any of you that can....

Maxine :0)

[morgan617]

I have emailed Oprah and Dr. Phil at least 5 times apiece....I think they just have certain agendas......ah well.

[Sophia3]

I hardly watch Oprah anymore but she has had some REALLY SALACIOUS shows lately about all sorts of sex stuff and open marriages and such. Maybe if we said ANS problems cause us to have kinky romantic habits, they will be interested.Sorry, major sarcasm. :) :angry:

(I was sent a petition against OPRAH for such shows which is why I know these topics are getting popular on her show)

I am welcome for ANY REAL PUBLICITY we can get out there and look forward to the interview report. The ONE and ONLY time I EVER saw Dysautonomia listed by name was on an episode of DATELINE in 1998.

So much for follow ups!

[SunsetParadise49]

Hi Everyone!

The interview went great! He went through almost all of his new notebook taking notes lol!! Anyway, he wants the article to be a little different then I intended, but that is fine because he is still going to describe Dysaut. and put DYNA's and DINET's web addresses in.

To my understanding, he wants the reader to know what exactly it is like living through an invisible illness. He asked me pre-Dysaut. questions to the present. He was very thorough and I can't wait to see how it comes together in the end. I haven't heard when it will be printed but I'll defiantly post it.

[joey2006]

Maybe the dr doesn't like the relative or maybe he didn't get approval from the network to air a story. I applaud you for your initiative in trying to increase publicity for dysautonomia. We are eagerly waiting to see the article!

I noticed that she also sent her response to my email (which my email to her was still there) to the production company so I think there's still hope. I can't believe tomorrow is the interview!! And I feel like crud today...I have a follow up appointment today with the family doctor so I am crossing my fingers it's not back to the hospital like last week!

Did you have the interview? One site I did not see you mention is NDRF. Are you familiar with this one? DYNA is great, too! I think the idea that was presented about Oprah was a great one. We need to really flood them with the requests!! I had done so just a few weeks ago, but will do so again tomorrow! HOpe you are felling better and that the interview went well!

[Sophia3]

Glad the interview went well. I bet it wore you out as well but thanks for sharing information.

Cool beans !!

Let us know if we can have a chance to read it.

[SunsetParadise49]

Glad the interview went well. I bet it wore you out as well but thanks for sharing information.

Cool beans !!

Let us know if we can have a chance to read it.

LOL you can say that again! It did wear me out. I went straight to bed after he left and slept for 3 or 4 hours. I think it was more mentally tired then physically...he had SO many questions and I was getting all confused lol.

[SunsetParadise49]

I have edited the names and the name of my high school, but here's the article! It's a little different then I expected but it's still awareness! He didn't put in DYNA's or DINET's link, I told him too but he must have forgotten or something.

Enjoy!

Seeing her way through an invisible illness

By Jeff H., Staff

Intelligencer Journal

Published: Nov 08, 2007 2:05 AM EST

LANCASTER COUNTY, Pa. - Sitting cross-legged on a love seat in her family's living room, Gwendolyn W., 19, tells me stories of a happy, normal childhood ? school, pets, ballet recitals, flute lessons ? all prelude to a bewildering health crisis that daily challenges her to find happiness in a life taking a detour from the normal.

One moment Gwendolyn was participating in gym class at PMHS. The next she was on the floor surrounded by classmates who saw her buckle and faint for no discernible reason.

That was three years ago, and since then Gwendolyn has learned more than she ever wanted about the capriciousness of health and the limits of medical science.

Doctors tell her something is wrong with the way her body regulates automatic functions such as digestion and blood pressure.

The problem is called dysautonomia, and for Gwendolyn it means dizziness, nausea, fainting and a heavy fatigue that counters her longing to be active like the dancer and marching band musician she was.

Battling tiredness

No procedure or pill can make her well. There's only hope time may lessen the symptoms. Mostly Gwendolyn is resigned to doing what she can and to not criticizing herself when her body refuses to do the things she wishes it would do.

Gwendolyn is an easygoing, soft-spoken, sandy-haired young woman who reads mysteries and listens to Keith Urban. During our conversation she's wearing a purple sweater and jeans.

When Molly, the family bulldog, leaps onto the love seat, Gwendolyn gives her a hearty welcome. But over the course of my visit, Gwendolyn tires. She reclines, wrapped in a comforter, her head on the armrest.

Gwendolyn tells me a good day is when she has enough energy to empty the dishwasher. A very good day is when she finishes the dishes and feels up to doing a load of laundry. Those tasks accomplished, she knows she'll need a nap.

More frequent than the very good days are times when it's a struggle to get out of bed at all, much less hang laundry to dry.

Gwendolyn tried partial school days and a lightened load to finish high school, but what enabled her to get to graduation last spring was district approval of an in-home instructor.

Gwendolyn's illness comes with a frustrating double whammy. The first blow, of course, is being sick most of the time. The second is knowing some people doubt her illness and think less of her.

It's hard for her to explain an invisible illness. There's no skin lesion, no abnormal shadow on an X-ray, no brace she must wear.

Seeking acceptance

People wonder why Gwendolyn can't do more; some have even questioned her about it. Or they think they can make her feel better by speaking of their own tiredness.

"The main thing is she wants to be believed," said Gwendolyn's mother, Valerie, who has been a mainstay of support.

Cheering her on from halfway around the world is Sophie H., a young New Zealander who also lives with dysautonomia and who keeps in contact with Gwendolyn by instant messaging.

"She is really positive," H. said in an e-mail to me, "and also knows that it's good for me to ? vent sometimes and just let it all out."

Knowing she's not alone with her unusual illness helps Gwendolyn persevere.

She is looking into taking a class at Harrisburg Area Community College and seeing how it goes. Her dream: a nursing career.

This summer, Gwendolyn attended a conference in Virginia for young dysautonomia patients, and the highlight was the Dizzy Dinner Dance.

The music was low and the mood light, and no one thought twice when some chose to move to the Macarena while sitting on the floor.