Hello Martha,

I live in Temple Texas and know that Janine is in Ft. Worth - perhaps sometime we could have a ptc gathering? Either in Ft. Worth or perhaps Hillsboro? Of course, right now my life is overwhelmed with breast cancer treatments and concern over my mother who is very ill - but it would be nice at some point to meet others nearby in the same situation - What do you think?

Denia

----- Original Message ----
From: softndark2 <rusha@earthlink. net>
To: ptc@yahoogroups. com
Sent: Wednesday, March 12, 2008 1:38:23 PM
Subject: [ptc] Re: Intracranial Hypertension Registry for patients

Hello Ralpha,

Martha from Dallas 52, Thank You!!! For this information. I hope
there will not be too much info to fill out in the packet that comes
in the mail, as I have no family helping me. But see a HUGE Need in
reporting my PTC.

Right now, I am at a OK time, with my PTC... except not being able to
eat, or take my Potassium, and trying to catch up on all my affairs
that have been neglected in the past 1 1/2yr. See my sergeon to
remove my Goiter, while I am feeling a part of the human race <grin>

I pray that you, and all the other's keep the faith!!! (Me
included) I wonder if most of the list is feeling OK, at this time
and catching up on life, like me OR GOD forbide, that none
are "down with their PTC" right now?

What ever your situation... . Hang in there, I remember when I only
had enoungh energy to read my incoming group email...

Bless You all,
Thank's Ralpha, for the Registry Info.
Martha 52, Dallas TX

--- In ptc@yahoogroups. com, Ralpha <rstaeger@.. .> wrote:
>
> I thought you might like to know about this chance to make a
difference.. .in your life and mine!!! Not enough is known by the
medical community about the disorder we share...this will only change
with research. This begins by collecting the medical records and
imaging studies of patients like us. Please become a part of this
important effort!
> Ralpha
>
> Why Does Chronic Intracranial Hypertension (IH) Happen?
> Why does it only affect some people and not others? Is IH genetic?
What's the relationship between weight and intracranial hypertension?
Are there medications I should avoid? Am I at a higher risk for other
diseases or disorders? Will I lose my eyesight? Are there better
treatments for intracranial hypertension? Why doesn't my doctor
understand what's happening to me? When will I get better? Can they
find a cure?
>
> If you've ever asked yourself these questions, then you know how
difficult it is to struggle with intracranial hypertension. The
answers can be found, with your help. The key is medical research,
which is why the IH Registry was established. It is the first and
only medical registry of its kind in the world today.
>
>
> Why Your Participation Matters
> A medical registry is a collection of medical data for a specific
disease or disorder. Researchers use the information to study
patients, learn about the disease/disorder and develop better
treatment options. It is a vital tool in the search for a cure.
>
> Each person is important in the IH Registry because every medical
history is unique and adds to our knowledge of intracranial
hypertension.
>
>
> Who Is Eligible
> Any person with chronic intracranial hypertension documented by a
physician is eligible to join the IH Registry. This includes people
with idiopathic intracranial hypertension of unknown origin (also
known as pseudotumor cerebri or benign intracranial hypertension) , as
well as those with secondary intracranial hypertension due to an
underlying medical condition or trigger. IH patients of any age, body
type, gender or nationality are eligible to enroll.
>
> There is no cost to enroll in the IH Registry. The IH Registry is a
joint project of the Intracranial Hypertension Research Foundation
and Oregon Health & Science University and fully complies with
federal HIPAA privacy regulations.
>
>
> Benefits to Enrolling
> *Participate in the search for better treatments and a cure,
including clinical trials
> *Demonstrate that IH affects a significant number of individuals
> *Expand knowledge about IH
>
>
> To Enroll
> To learn more about the IH Registry and receive an enrollment
packet, you can contact the Registry directly through our website
<http://www.ihrfound ation.org/ intracranial/ hypertension/ info/C36>.
You may also call the IH Registry office at 503.418.2141. Thank you
for your interest and participation!
>

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