Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[pberggren1]

There are at least 4 Weggies right in my City with a population of 17,000.

[Al]

It is true that there are, for unknown reasons, clusters. My cousin lives in a small town in North Carolina, population about 5K. She personally knows of four cases there. What I am wondering is whether some of this has to do with awareness of diagnosticians. In some areas, doctors have never heard of the disease, so wouldn't ever diagnose it. In others, perhaps it is overdiagnosed.

[Stephanie78]

It is true that there are, for unknown reasons, clusters. My cousin lives in a small town in North Carolina, population about 5K. She personally knows of four cases there. What I am wondering is whether some of this has to do with awareness of diagnosticians. In some areas, doctors have never heard of the disease, so wouldn't ever diagnose it. In others, perhaps it is overdiagnosed.

.

Where at in NC? We are in Wilmington (right on the coast).

I have a lot of people say "Oh My goodness I know someone who has the exact same thing" however come to find out they have something else paired with "granulomatosis". That's all they hear for some reason.

When we took John to our local ER (his ENT had already DX him) we told them he had WG. They REFUSED to acknowledge that. They DX him with diverticulitis. 2 days later he was at UNC in ICU due to how sick he was.

[delorisdoe]

I am the only wegeners patient for miles and miles. I am sure of it.

[Al]

.

Where at in NC? We are in Wilmington (right on the coast).

I have a lot of people say "Oh My goodness I know someone who has the exact same thing" however come to find out they have something else paired with "granulomatosis". That's all they hear for some reason.

Mt. Gilead, in Montgomery County. The only time I've visited Wilmington was after some hurricane--Donna, I think. The beach was a mess. Must be better now! Don't know about medical practices there, but Chapel Hill is a hub of state-of-the-art knowledge about ANCA disease.

Al

[Stephanie78]

Mt. Gilead, in Montgomery County. The only time I've visited Wilmington was after some hurricane--Donna, I think. The beach was a mess. Must be better now! Don't know about medical practices there, but Chapel Hill is a hub of state-of-the-art knowledge about ANCA disease.

Al

We travel to Chapel Hill. Love the Wilmington Area (that's where I was raised) but the doctors lack A LOT! John see's Dr Ron Falk who is a WG "know it all" (as well call it).
Maybe Hurricane Diana (84)? That was a rough one!

[Al]

As for the 1 in 5000. That number was given to us from a study with the Vasculitis foundation. It is actually being diagnosed more often now then ever before. However I do believe (According to the person talking to us) was that some of this was "believed to be the situation". Meaning some doctors are not educated on WG and they believe more patients have the disease HOWEVER they are NOT correctly diagnosed for it. So the 1 in 5000 could be a speculation on how many they "believe" have the disease.
But I too have heard that number on several occasions when the drs were talking with us.

Not sure, but I think this number probably includes other (non-ANCA) forms of vascultis as well. Still, your point is a good one: no one knows for sure how to diagnose this thing.

Al

[Al]

We travel to Chapel Hill. Love the Wilmington Area (that's where I was raised) but the doctors lack A LOT! John see's Dr Ron Falk who is a WG "know it all" (as well call it).
Maybe Hurricane Diana (84)? That was a rough one!

Actually, I think it was the earlier Diane. 1955 (I'm an ancient guy now, but 7 years old at the time). Dr. Falk is the Big Man for sure.

Al

[Stephanie78]

Ummm (clearing throat) I wasn't around then, so it could have been a "Donna".
Dr. Falk is an amazing man!

[HopeinTN]

I know it's prety rare and I'll add that to my list of questions to the doc on my next visit. As far as hurricanes go, all I know is that mine "Katrina" has been retired.