Some Positive News To Report

[Guest Julia59]

I have written many letter to various media, hospitals, physicians ect. trying to advocate for dysautonomia patients. I have heard so many heart breaking stories on the toll this illnes takes on peoples lives---I couldn't help but send some examples---a little "SHOCK AND AWE" to get the attention of anyone who will listen. In my examples I use no names----just the experiences---the devastation, the losses, and the ignorance.

Today I received a letter from The Director of Customer Service at MUO---(hospital where Dr. Grubb works).

Too often I have seen and spoken to other physicians who work at the same hospital who didn't know much of anything about dysautonmia. to me----(this is behind the times-----for a "University" hospital. They teach, so I would think they would be up to date, especially with one of the Top specialists in the world on ANS disorders working under their nose. The physicians aren't necessarily the ones I would hold accountable--------it's the administration, lack of funding---ect.

I quoted a paragraph in the Customer Service Director's letter, please see below.

"The information contained in your letter regarding this debilitating disease is very informative. I understand your concern regarding the future of patients afflicted with this disease. I've shared your information with our medical staff director to create greater awareness of the need for more experience in this area."

This is very encouraging----I will be sending her heartfelt thanks, and also let her know I would like to be informed of any conferences, classes---anything to due with furthering the education of their medical staff.

I will keep abreast of this process by staying in contact---(followup) with the director of customer service.

Just thought I would share some positive news.

Julie :0)

[Ernie]

Thanks for advocating for us Julia.

[ellen]

Yes, Thankyou! That is so encouraging!

[Poohbear]

Glad you got a reply.

FYI....One of the other 'top' facilities that has a research center for folks like us warned me that if I needed to go through their ER that most likely the ER staff would be clueless about my disorder. They specifically told me I would need to tell the ER staff to contact them.

Another case you wouldn't expect it since their center is PART of the hospital.

Again, glad you got a response though

[dizzygirl]

You go girl!!

go Julie! go Julie! go gogo go Julie!!

WAHOO!! that is great news!!

[AJVDK]

Wow! Way to go! Thats great!

Amy

[Guest Julia59]

Thanks everyone for your encouragement!

Poohbear---On my response back to the director---I will specifically mention that the ER is an area of medicine that is lacking knowledge, and that the majority of dysautonomia patients get treated very poorly, or improper treatment. I will continue to stay on top of this.

I will also add that I would like to be present if possible during part of the education process.

Education is something i'm very passionate about.

The brochures have been such a success helping in this process. I think with a group effort, trying many different avenues in addition to handing out the brochures will help insure more progress.

Julie :0)

[dianaD]

Julie,

Thank you for all of your efforts and work. If you would like, you could give some of us a copy of the papers you give out. I, for one, would be happy to join you in the quest. I'm sure there are others out there who would do the same.

Feel free to PM me,

Diana

[Dizzy Dame]

That's great Julie! Thanks so much for speaking for us!

Hugs,

Lauren

[Guest Julia59]

Diana,

I would be glad to send via e-mail attachments of some of my letters written. However, i'm a bit embarrassed as my letters are a bit wordy. My summerizing skills aren't the best. I'd like to blame it on the ADHD-----but I'm afraid I'm a bit of a busy body---and sometimes use some "shock and awe" to get their attention.

I wish I had a copy of the letter I sent to promedica corp. which houses several hospitals--TALK ABOUT "SHOCK AN AWE"-----I received a response in less then 48 hours. However, Promedica hospitals still don't have anything about any of the forms of dysautonomia on their web site yet. At least no as of this past winter---I haven't looked lately. I typed it into my old computer in 2001, a few months after I found out I had POTS.

I scolded one psychologist when I wrote a letter advocating for another patient once. He told her NCS was not real, and it was something Dr. Grubb made up----------now how dumb is that, and yet this comes from an educated man?

I still need to finish the one I wrote to Michael J. Fox a couple years ago. I got so out of control---way too wordy----so it's been sitting there for a while.

I usually start out by telling them some of my history---and my involvement with the support group locally ect. Then I'll use examples of some of the most drasitc POTS/dysautonomia cases. It really is hard to summerize this stuff----there is too much to tell. You know how physicians do studies------well perhaps some of them--(the ignorant ones) don't know we are conducting a study of our own, and they are the ones being studied. There is just know excuse on the mass ignorance out there on the functions of the ANS.

I just don't get it---I see people who can't stand, control thier BP, heart rate, digestion, endocrine system, their bladders don't work--horrible tremors---sensitivities to everything, medicines, foods, oders ect.

And the mounding medical bills-----all for a conditions that doesn't exist in the minds of some of the most educated people we have come accross. I thought the ANS was an integral part of our being.....

PM me personally if you would like to see soem of the letters I wrote.

Julie :0)