Re: Intracranial Hypertension Registry for patients
Hi everyone!
I went to the site via the link, but unfortunately wasn't able to submit my information to join the registry. I did call the phone number listed, and the young lady I spoke to said that I was the second person who indicated that they were unable to submit their information via the site. She said that it would be looked into, and then took my information over the phone to send me the necessary packet.
She also indicated that at this time they have approximately 980 people on their registry, and that once they reach between 1000 and 1500, SERIOUS study and research will be able to start, to get more information on IH. I would STRONGLY encourage anyone who has not yet registered to please do so. This is a way of giving ourselves a voice that will be heard by the medical community. Perhaps we will finally be taken seriously, and not told we are fat, or its all in our head, or we just need to "suck it up" and deal with this debilitating disorder.
Lets be heard and taken seriously and find a way to effectively treat this disabling disorder!
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...
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...
Hello Martha, my name is Janine and I live in Fort Worth. Are your physicians in Dallas? I am looking for some second opinions regarding my vision. ... ...
Hi everyone! I went to the site via the link, but unfortunately wasn't able to submit my information to join the registry. I did call the phone number listed,...
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...
Hello Denia, That sounds like a Wonderful Idea!!! I would enjoy meeting someone else that understands how I feel, and sure both you ladies would also. I...
Hey Denia and Martha, I would really enjoy meeting u both. I am only about 45min from Hillsboro, actually we were at the outlet mall 3 weeks ago. I know there...
Hello Janine, Yes, my Dr. is at www.utsourthwestern.edu/ophth . I Love my Doctor, of course I feel he saved my life (smile). John G McHenry UT Southwestern...
My sister, Diana has PTC also. She lives in Corsicana,Tx, goes to the Dr. in Dallas too. She would love to be included in your get together if she is able. She...
Hi Tina, I would love to meet your sister - if you think she would feel up to joining us - the more the merrier! That would make at least 4 of us - now just to...
Hi Martha, Thank you for your thoughts and prayers - sorry I have been out of touch for several days - my Mother passed away on the 17th and we were out there...
Thank you. Just let me know when and where. Thanks, Tina ... From: Daniel Mcneill <de_mcneill@...> To: ptc@yahoogroups.com Sent: Wednesday, March 26,...
Well, i live in Longview. And I wouldn't mind driving out to visit if there were a few of us getting together. It would be nice to talk to someone who...
Hey y'all, I live north of Abilene and would love to try to get together with y'all at some point , if I am not intruding. I have had IH (hard not to say PTC...
Ldunn821@...
Apr 8, 2008 4:15 am
Hi Lori, it would be nice for all of us Texans to get together. I had a VP shunt, but it was removed almost a year ago. I seem to be doing great w/o it. ... ...
Hi Lori, I grew up in Bronte and went to college in Abilene - how far are you from there? We probably just need to pick a weekend in June and - or whenever and...
Hello Everyone, Nice to be back on line, and check and see how ever one is doing. And glad I didn't miss the "Texas Get Together". I have been without my...
This is starting to sound, really exciting!!! I would like to let the group know: That I have not driven in years but use the "Dart Paratransit" service. I...
Hello Tina, Martha and everyone, Sorry I haven't been on in a little bit - My Mother passed away on the 17th of March and we have been taking care of things...
Sorry to hear of your lose, I lost my mother in 2003 so I know it can be devastating.Yes, a saturday in may or june is fine with me. Tina ... From: Daniel...
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