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Betty Lecat
Member
(6/24/04 2:09 pm)
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FMD POW WOW IN SANTA CRUZ, CA IN AUGUST
Well, gee...I just emailed both Celeste and Soficrow re not hearing from these two INCREDIBLE gals in some time! Pls let us know everything is okay? You two have been SO instrumental in the objective side (as has Susan Gould) of this disease...research, setting up sites, etc., etc...

Okay! I think we're finally able to pull off a Pow Wow for FMD in Santa Cruz in August...(see Yahoo FMD site for dates, Poll...if any questions, post here or email me at lecatjb@sti.net
?

I think we have...for sure somewhere about 12 attending so far...and as I've keyed on the other web sites, SO HELP ME...IF WE GET ENOUGH OF A TURN OUT, I'M TAKING MY BB GUN INTO LOCAL TV STATION TO GIVE US AT LEAST, AT LEAST 5 MINUTES COVERAGE!

I'm trying to reach as many of us as possible re this Event...

But to have Soficrow, Celeste and Susan (Susan posted that she's sure going to try and make it...YES!)would be the "icing on the cake" with all their objective knowledge!

Picture us...at a "convention table"...each telling his/her story...followed by Celeste, Soficrow and Susan giving objective sides to it (must preface that Susan said she'd be coming as "a mom of an FMD'er", but still...she has access to giving US more objective insight on disease)

What do you think, guys?

Betty

Rickfmdfaqscom
Unregistered User
(6/26/04 12:31 am)
Reply
POW WOW
Great Idea,Betty.If celeste and I are in or around California in august we certainly will attend.Please post the details here in this forum so that others may also,the more the better.The media coverage would be a bonus.thankyou for all your hard work and dedication to this subject.Rick@fmdfaqs.com

Betty Lecat
Member
(6/26/04 12:42 pm)
Reply
RE FMD POW WOW SANTA CRUZ, CA.
Thanks!

I will post details as soon as we get them all together!

As one other FMD'er out here in "internet land" posted,
"Even if we can't all meet in one place, why not a series of 'FMD POW WOW'S' here and there?"

Rick...hard work? Dedication? It's people like you & Celeste, Soficrow (Lani), Susan Gould and (who is it that started Yahoo FMD Site anyway...never hear from he/she?), and ALL those caring people who join in and Post...empathize with us...

Take care and gosh, I hope you, Celeste, EVERYBODY can make it! :>

Betty

Rick
Unregistered User
(6/27/04 2:41 pm)
Reply
Who started the Yahoo site
I copied a email he wrote when the research efforts were going on. This is the person who started the site, David Hughes.


-----------------------------------
From David Hughes
To: Celeste

I just spoke with the Dr. All we need at this time is a head count of the number of people interested in participating. If you can help me get a count from the others, I would appreciate it.



David H. Hughes
Travelers Ins. / AEIC
P. O. Box 650209
Dallas, TX 75222
1-800-991-5334 ext. 6952
FAX (214) 570-6401

cherylgoldeneycom
Unregistered User
(6/28/04 1:33 pm)
Reply
FMD - Carotid Dissection
Just diagnosed - where can i find the most upto date info. How do the chat rooms work?

bettylecat sixty betty
Unregistered User
(6/28/04 1:45 pm)
Reply
rE: Cheryl, "just diagnosed"
Oh Cheryl...What a whirlwind you are to embark on!
You've found one of three websites...
See front page on this one...it will give you address of another great site, (fmd group on yahoo site)...

First of all, YOU ARE NOT ALONE. There are so many of us out there that, after being diagnosed, have turned to internet and keyed in FMD because...DRS DON'T KNOW FOR SURE WHAT PROGNOSIS TO GIVE US!

Please...check out this site thoroughly, as well as the other two...

And, will you share your story?

What kind of FMD do you have? How did they find it?
Where are you? How old are you, etc!

My history (Betty Lecat) is listed on this site...under FMD stories, and I also do alot of posting on the Yahoo Site...

Looking forward to hearing from you!
Betty
lecatjb@sti.net

bconley
Unregistered User
(6/28/04 7:57 pm)
Reply
fmd
Hi Everybody,
This is Bertha in Gary,IN. Haven't heard from some of you in a while.
The forum sounds GREAT! Sorry I won't be able to make it, but that's right the opening of school for me and I will have several workshops to prepare for and give.
The idea of having several in different locations is wonderful. I'm finding that there are more of us than doctors think. Do they communicate with each other?
I was blessed to find doctors who do communicate and aren't afraid to call in help.
For those of you who don't know, I'm a 56 year old African American female with fmd in both carotids, the vetebrals, and right renal. I have had angio of the renal, but they were unable to stent because of location and extent of the disease. Because of the location and extent in the carotids, they don't want to do angioplasty if they can help ti. Too risky. So Plavix and I will be friends for a while.
I haven't had to be hospitlaized since February.
I hope everybody gets to enjoy a stress and hospital free summer.
Let me hear from you. My e-mail is BERTHACONLEY@aol.com.
Thanks to everyone, especially Rick, Celeste and Susan.

God Bless,
Bertha

Betty Lecat
Member
(6/29/04 11:23 am)
Reply
RE: Bertha
Hey, Bertha...
Great to see you posting...
I...I remember your name, but haven't heard from you in a long time.
My FMD is in bilateral renal arteries, with multiple aneurysms, one surgically removed...
Haven't been checked in other "areas"...hey, sometimes it's better NOT to know.
The good news is...
In the early 90's, (when I was first diagnosed) and years following that, my FMD was, for some reason, "untreatable"...blood pressure remained labile...
This past year, with smaller needles and threading mtl, they were able to do angioplasty on right kidney, and...so far, I'm on half the amount of BP pills I was before...
So...hang in there, changes are coming fast!
Great hearing from you!
Betty

vmotlow
Unregistered User
(7/14/04 10:51 am)
Reply
Santa Cruz
This is an apology for not letting someone know earlier on that I won't be able to make Santa Cruz. I would like very much to join you, but that is impossible at this time.
I just spent the last hour reading anything I could find on carotid fmd. I am taking coumadin at present.
I really dislike coumadin, and would like to know of an alternative. Any suggestions, I am interested.

sixtybetty
Unregistered User
(7/14/04 6:05 pm)
Reply
carotid artery FMD
Hey, Vena,this is Betty...your friend from Yahoo FMD Site? There's a whole bunch on Yahoo Site that have had all kinds of bypass surgerys, etc on carotid artery FMD...
Plus, any one out there (on this website) that can answer Vena?
Oh, Vena...don't "let it go by"...Soficrow (lanie), who posts on this site frequently, has written intensively re non invasvive diagnosting tests, and there are, not only case histories on this Site, but the Yahoo FMD Site...
Just write the same question...and people will reply...
There's so much being done for FMD!
Take care Vena
Betty
(Lecat)
lecatjb@sti.net if you have problems accessing other Sites...)

bconley
Unregistered User
(11/2/04 1:17 pm)
Reply
FMD
Hi,
Bertha here. How was Santa Cruz? Is there anything we need to be doing? I know everyone is busy, but could we have just a short note?

Bertha

sixtybetty
Unregistered User
(11/9/04 5:53 pm)
Reply
REl POW WOW IN SANTA CRUZ
Hi~

The Pow Wow was GREAT! Bertha, do you have access to the Yahoo FMD Site (see front page of this web site for address)...there's a photo section there and it has pictures of the 4 of us from California that attended...
We bonded...I cannot put in words how wonderful it was to be with people who truly empathized with everything I had to say...
Husbands came with (but stayed out of our way) :>
How ARE you?
Betty

Betty Lecat
Member
(11/9/04 6:05 pm)
Reply
SOFICROW...CELESTE....
What's happening?
Where are you guys?
How come this format has changed?
Betty

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