The Evening Telegram

[KarenH]

Hello everyone,

Our local newspaper wants to do a story on me and to raise awareness on
Wegener's and the affects it has on people....Does anyone have anything they woud like to add or comment on so I will make sure this hits the paper....any help would be great....

Thanks
Karen

[Al]

There is so much that can be said, Karen. The trick is to get it down to sound bites that work for a news story. Unfortunately, I am not much good at that kind of story telling, so I can't give you much good advice. I suggest talking to Marta, who is pretty good at this sort of thing. And a few other forum members have done public programs--Kami, I think, and drz. Perhaps a few others.

Al

[Dryhill]

Karen, Marta is probably our expert as Al suggested. She is doing a lot in her area to raising the awarness of all AI diseases, she might even have some stuff she can download to you.

Jim

[pberggren1]

Just tell your own story Karen and how it has affected you. Tell about the meds, diagnostic tests, organ involvement, etc.

[drz]

Hello everyone,

Our local newspaper wants to do a story on me and to raise awareness on
Wegener's and the affects it has on people....Does anyone have anything they woud like to add or comment on so I will make sure this hits the paper....any help would be great....

Thanks
Karen

Read Marta's blog so you can throw out some of those impressive numbers to let readers know why learning about AI is important to everyone. The difficulty and problems in getting a diagnosis is often something where people can empathize along with the uncertainty of the treatment and continuous risk of flares.

[Hal]

Karen,

Where in Newfoundland are you? I am in the St. John's area. You are the only person from here that I have crossed paths with here on this forum. I have corresponded with two other gentleman here in town too, who were diagnosed several years ago. They were quite helpful to me.

[KarenH]

I'm in St. John's as well.....Since I was diagnosed back in October, there has been six more so its becoming more and more popular....were your kidneys involved as well, I'm on dialysis now which is torture....The Evening Telegram wants to do a story on me so stay tunned, I will let you know when this will be posted.....You can add me on facebook Hal...it would be nice to know more people in my area living with this dreadful disesase!!!

[Hal]

Karen,

The dialysis must indeed be horrid. I was diagnosed in August 2010 and started the heavy duty drugs in early September. I had a lot of body functions going wrong simultaneously, including some vision loss, sinuses, excruciating pain, blood clots, nerve damage and dreadful kidney involvement numbers in the blood work, among other odds and ends stuff. I am sure there is "some" kidney damage and my Rheumatologist is monitoring that like a hawk. Fingers crossed on that one.

When I saw him last before year-end, I asked about prevalence of Wegs here. He did mention there were four new cases at the Health Sciences in October, and three of those came in through the ER. He said that event was exceptionally rare. You were probably one of those? Given our small population here, and from the informal head count I am doing of other Wegs cases in the region, there does appear to be a statistical anomaly. But maybe not... dunno.

This link is quite useful in case you have not viewed it yet. There are three webinars on it. I highly recommend you view them before your interview, as there are numerous speaking points you can use. Homepage | The Lauren Currie Twilight Foundation (http://www.thelaurencurrietwilightfoundation.org)

Also, I had a quick look at your Facebook page. There are quite a few of your friends there that I know professionally. Another interesting anomaly.

Looking forward to seeing your interview. I sent you my personal email in case you want to compare notes.

Hal.

[Dryhill]

When I saw him last before year-end, I asked about prevalence of Wegs here. He did mention there were four new cases at the Health Sciences in October, and three of those came in through the ER. He said that event was exceptionally rare. You were probably one of those? Given our small population here, and from the informal head count I am doing of other Wegs cases in the region, there does appear to be a statistical anomaly. But maybe not... dunno.

What industries are there in St. John's, anything that is high in pollution? There does seem to be a higher level of cases in pollution zones and at a meeting of AI disease doctors last year they were concerned how AI disease is on the increase.

Jim

[Hal]

What industries are there in St. John's, anything that is high in pollution? There does seem to be a higher level of cases in pollution zones and at a meeting of AI disease doctors last year they were concerned how AI disease is on the increase.

Jim

Actually, ( tourism advertisement here ---> ) there is no where on the planet that has fresher cleaner air than here. Up until I got sick and the swelling / nerve damage in my feet grounded me, I was an avid outdoorsy hiker type.

But, I have spent my entire working life indoors, so who knows what or modern sealed office buildings or homes are like?

This place is small though, and is often like "living in a fishbowl" ... everyone knows someone who knows you. Could be genetic thing too. I am curious where Karen works actually, since I know numerous folks on her Facebook page from work, but I will take that offline as I do not want to mention employers here. But it would be statistically interesting if we worked for the same employer! I will await Karen's hopefully offline comments on that (smile).

I am seeing my specialist again soon and might see what further tidbits he can tell me.

[Dianne]

Small world. I'm originally from St. John's.

[Hal]

Hello Dianne, small world indeed!

Speaking of which, both KarenH and I did indeed work in the same building for years, same floor (different divisions). What are the odds that two people, in those circumstances, would get sick with aggressive Wegs generally around the same time? I could speculate here on triggers but really no point, since even the experts do not know. Sigh.