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sundancer104
09-10-2013, 10:29 AM
Hi,
I am new to the site. I have Wegener's Disease and was a first responder at the World Trade Center.
I am trying to locate anyone that was at the World Trade Center on or after 9/11 and who has since been
diagnosed with Wegener's Disease. If you were or know someone who was, please reply asap.
Thank you. Richard

Debbie C
09-10-2013, 10:54 AM
Sorry Richard, I saw the plane hit the one tower while watching Good Morning America,but I wasn't there.I just wanted to welcome you to our forum and tell you I'm sorry you now have wg. There are alot of wise,good people here and if have guestions or need to vent here's the place. I also want to say I'm sorry you had to witness such a horrifing event but glad you made it out alive.

NikkiNicole
09-10-2013, 11:37 AM
Welcome to our place! I am so sorry you had to experience that but I thank you for all that you did. I was way over here on the left coast when all that happened so I cannot say I was there.
With so many of us, I am sure there is someone that could help you out.

mishb
09-10-2013, 10:45 PM
Hi Richard,

What a cruel hand you have been dealt. Can I guess and say that WG has affected your airways and lungs??
Probably the stress of that day and weeks to follow, would not have helped either.

I would just like to say sorry but also, THANKYOU for being there to help :hug3:

carriej22
09-10-2013, 11:51 PM
I'm all the way over here in Atlantic Canada so I can't say I was there either, but sorry you have this disease.

drz
09-11-2013, 01:09 AM
Hi,
I am new to the site. I have Wegener's Disease and was a first responder at the World Trade Center.
I am trying to locate anyone that was at the World Trade Center on or after 9/11 and who has since been
diagnosed with Wegener's Disease. If you were or know someone who was, please reply asap.
Thank you. Richard

There is a TV series on now about 9-11. Maybe you are in some of footage. Don't know any one else there with Wegs. There have been lot of reports about health problems later faced by the people and dogs who worked at the site. Sorry you got Wegs. Thanks for your service and hope you are getting adequate treatment with good results.

Alysia
09-11-2013, 05:11 AM
Dear Richard,
I saw it on TV, terrible pics no one will ever forget. tomorow is that horrible day...
my heart is going out to you, to your brave doing, for witnessing hell, and for getting WG. too much suffering.
sometimes I am thinking that AI illness is an Illness in which "the body became crazy" since it attacks itself, which is a "crazy" thing to do. but maybe in a "crazy" state like that day, no one can remain totally sane...
would you like to tell us more about you ?

annekat
09-11-2013, 06:17 AM
Welcome to the forum, Richard. I'm glad you found us. This is the most valuable and easily available resource for anyone who has been dx'd with WG, in my opinion (aside from good medical treatment). Many thanks from all Americans for being a first responder to that scene, which was no doubt horrific beyond anyone's imagination. I hope if someone else was there and ended up with WG, they will see this and respond. It seems perfectly feasible to me that you could have inhaled stuff that would trigger Wegs, not to mention the stress involved, which is itself a trigger for disease activity.

Woodsyartist
09-11-2013, 10:22 AM
Thank you for the work you have done. I think the question you are posing is one which runs around in my head constantly, as we do not know the cause but at least would like to find some co-relation to how we ended up where we are at... while so many others may have our same experience but are WG free. Best of luck and use the forum to get the info you need to direct your treatment. Sorry I could not help.

Age
11-09-2015, 02:29 PM
I am a first responder, I was just diagnosed with Wegener's last month, I have been looking for someone like yourself to talk too, I hope you get this. I have been in the WTC health program for the last 10 yrs, and I was told there is one other Wegs patient that has been certified.

JeanMarie
11-13-2015, 12:48 AM
Welcome to this forum & thank you for your service. I am sorry you are going through this. Sundancer only made this one post. Maybe you can try a private message to meet him. Please let us know if there is anything else we can help you with.

annekat
11-13-2015, 03:40 AM
Welcome to this forum & thank you for your service. I am sorry you are going through this. Sundancer only made this one post. Maybe you can try a private message to meet him. Please let us know if there is anything else we can help you with. That's exactly what I was going to say, Age. If sundancer is getting email notifications of posts and private messages, he should see these eventually, so keep trying. You might also scan the Weggie map, where I see you have added yourself, to see if you can find him in another nearby area or state. He may have moved. There are sometimes full names given with the map pins. Good luck.