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AndreainArkansas Message
17 Feb 2010, 01:28 AM

I worked on this site all day but had a file extension wrong. Unfortunately it will only let you submit to Google once daily so I can't be sure if I have fixed the problem or not. I'll call tomorrow if not. If anyone is interested in joining, I imagine I'll have it going by 2/18/10. I have no experience in this area--just putting something together. I heard from someone doing a research study in Cleveland and she said her former patients were talking about getting a group together and it's my hope we can all merge here since we are a rare bunch.
umbrellachch Message
17 Feb 2010, 05:52 AM

i am in.
AndreainArkansas Message
17 Feb 2010, 02:36 PM

Awesome! It's up right now but I'm still working out some of the kinks. I need to make it where you don't have to show your email if you don't want to and on the "tell your story" page the font is yellow but I finally have it launched. It looks just as amateurish as it is but I liked the idea of having one just for PTEN rather than having to come to a site that's all kinds of rare conditions grouped together.
karlas202 Message
24 Feb 2010, 03:15 PM

Hi guys---My name is Karen and I am so happy to find a little group to talk about Cowden Syndrome. There are 2 small group on Facebook. I was diagnosed with Lhermitte Duclos Disease in 1991, I have all the signs of Cowden's and have recently joined a research group at the Cleveland Clinic that is headed by Dr Charis Eng. So far they have only taken blood to diagnose this but whatever I have to do I will participate. I have 2 sons who have chosed not to be tested until we get the results of mine back. I also have a beautiful granddaughter that we are hoping will test negative--she is one. I am lightly brain damaged from the tumor and it is growing back so there is another surgery in the future. I am 53 and live in Alabama. Where is everyone on here from? Ya.ll Take care!!
AndreainArkansas Message
24 Feb 2010, 07:26 PM

Didn't realize there were groups on Facebook. I wish I hadn't created that site now. $25 down the drain and that's kinda hard since I'm on SSI but anyway my intentions were good. Cleveland is where I wanted to go but with our income it isn't possible. I rely on Arkansas Medicaid for insurance because my dad let his lapse on me in 1986 when I was 9 and it was the beginning of the end for me in being able to be insured. I live in another A state. Arkansas. Betcha we both have accents :) Nice meeting you Karen. If you guys would rather have a site than a group on facebook that one is open. I would even turn it over to someone else (since it is currently paid up for 6 months) to make it look better. I just wanted a central spot for information. Right now we are within a week or two of knowing if my kids have it and if it is positive then I know I will need support but I have yet to find anywhere but here for support and it isn't active.
karlas202 Message
24 Feb 2010, 07:35 PM

I would prefer to have a specific web site to go to and vent--there is not alot of activity on facebook and there are a lot of posts that are not in English--I can't read a foreign language--unfortunately. Please tell me the e address of your website.
AndreainArkansas Message
25 Feb 2010, 05:38 PM

Sure. It is I'm hoping it shows up on here since some boards are flukey with what they allow. Hope to see you there.