We need to be HEARD!

[Guest guest]

Hi all you Wonderful Chiarians and Zipperheads!

And a very special Hello to those who are reading this on behalf of a person in

your life who is living with Chiari. We need all the moral support we can get,

especially from those who will take the time to educate themselves about us.

It breaks my heart and completely frustrates me each time I read how ONCE AGAIN

one of us has been disregarded by our Dr's, the supposed experts that have taken

a vow to help us.

I also have had to fight not just this crazy disorder, but my NS & Nsg's as

well, and not just once but over and over again.

The most maddening thing to me is " WHY " ..as I am certain you can all relate to.

I am not trying to just complain here tonight. What I am wondering is if there

is more that we can be doing? To follow research, to develop a protocol for

being more complete in diagnosis process with us? Also I believe that if a Dr is

not properly trained and educated about a condition then they shouldn't be

" pretending " that they are and then leaving us with half-assed care! Think

about the folks that work on our cars, a Ford dealer wouldn't have a mechanic

who only knows Chevy's work on our cars, so why do Hospital Administrators all

over the country get away with causing the confusion they do every time they

tell us " that memory problem isn't Chiari related " ! Are you kidding me, then why

is it that about 85% of us suffer from some sort of memory issues?

I will be willing to do whatever it takes to help and rather then try to

reinvent the wheel, I am asking if any of you have any ideas what we can do?

I definitely want to applaud our on line group leaders for giving us a platform

where we not only get to know each other, but to support and teach one another.

I hope you all take what I am saying in the heart it is being said and that is

" It is time we were HEARD and respected "

God Bless every one of you, I Love and pray for us all!

Beverly in Oregon

Start each Morning Thanking God for the New Day!

[Guest guest]

Hi,

I've tried to stir this subject up before but it's

unfortunate that many of us have such fatigue

that we can barely get through our own day

and even then on a superficial level.

There is little energy left to start a campaign

- which is what is needed to get this matter

off the ground and noticed by the 'powers that be'.

We have all been frustrated, annoyed and left

in despair, by inexperienced and unknowledgable

consultants, who's ignorance (or arrogance!) leads

them to believe that 'its all in our heads'

(well as someone once said before, yes it is actually!)

This allows them to leave us to suffer for many years

so unnecessarily.

Trouble is, there's no point 'venting' at the consultants

(operational level), we need to inform those in control,

i.e. the NHS in the UK, the NIH in USA etc (top

management level) and also the teaching hospitals

and examination boards (educational level)

but a lone voice is not going to make much of an

impression, we need a well orchestrated choir!

Such a concerted effort was made by many of you

bringing it to the attention of senators in the USA

who subsequently proclaimed Chiari day's or Chiari

Awareness months (I'm not sure what that entailed)

so the foothold is now already in the door for you.

I don't know how we'll begin in the UK!

Barbara

(UK)

[Guest guest]

Hi Barbara

I too am in the UK ... maybe the Anne Conroy trust can point us in the right

direction of how to go about setting up a campaign, didn't a girl with Chiari (

I am so sorry but I have forgotten her name) stand on a plinth in Trafalgar

Square and try to bring awareness of Chiari to the everyday person (snd media) I

wonder if she has anything other ideas up her sleeve

I would be willing to help you if we can come up with some ideas for 'how to be

heard' here in the UK

Best Wishes

Jeanette

________________________________

To:

Sent: Wed, 26 May, 2010 13:44:58

Subject: Re:We need to be HEARD!

 

Hi,

I've tried to stir this subject up before but it's

unfortunate that many of us have such fatigue

that we can barely get through our own day

and even then on a superficial level.

There is little energy left to start a campaign

- which is what is needed to get this matter

off the ground and noticed by the 'powers that be'.

We have all been frustrated, annoyed and left

in despair, by inexperienced and unknowledgable

consultants, who's ignorance (or arrogance!) leads

them to believe that 'its all in our heads'

(well as someone once said before, yes it is actually!)

This allows them to leave us to suffer for many years

so unnecessarily.

Trouble is, there's no point 'venting' at the consultants

(operational level), we need to inform those in control,

i.e. the NHS in the UK, the NIH in USA etc (top

management level) and also the teaching hospitals

and examination boards (educational level)

but a lone voice is not going to make much of an

impression, we need a well orchestrated choir!

Such a concerted effort was made by many of you

bringing it to the attention of senators in the USA

who subsequently proclaimed Chiari day's or Chiari

Awareness months (I'm not sure what that entailed)

so the foothold is now already in the door for you.

I don't know how we'll begin in the UK!

Barbara

(UK)

[Guest guest]

I just want to say I so needed to see this today...just came from a

neuro-ophthalmology appointment where I was told chiari and pseudotumor

can NOT cause nausea and a constant headache....I thought my head was

going to pop off....it never ceases to amaze me.

Blessings

in Pittsburgh