Living in Florida?

[debhaz22]

Hi all,
I will be moving to Florida in June and am hoping there are some of our Weggie "family" there so I will know someone! Anyone living there??
Thanks!
Deb :cool1:

[jakekell]

Deb,

I live in Naples in the winter months. Where will you be living?

Jakekell

[debhaz22]

Hi Jakekell,
I'm looking around Tampa...

[jakekell]

Tampa isn't real far 2 to 2 1/2 hours. I don't know much about Tampa, but Naples has a lot of good medical care. I do go to Dr. Ville-Forte at Cleveland Clinic as I am in Michigan as my home base. The docs I have gone to here are quick to get you to the right people so that is good. I know some people have had to go on disability are you still working?
I saw your friend request and if I did it right I accepted it, not always great at works of this site in fact right now can't remember how to start a new thread lol!

I think there is another woman that has wegs around Orlando. I have never met anyone else with this disease have you?

Mary

[rebekah]

I love Tampa! I went to school at USF. It's a great city with a lot to do and you're just a little drive over to the beaches. I know a rheumatologist, Dr. Lin, is at USF now after doing his fellowship at Cleveland Clinic. One of my friends I made through the facebook group has seen him and had good things to say about him. I think they're working on having a vasculitis clinic at USF... I know it will take a while to organize that though. If you do move to Tampa I can ask her for the names of some of her doctors and if she would recommend them. I can give you names of ones to stay away from too.

[debhaz22]

THANK YOU Rebekah! I would SO appreciate that!

Mary- no, I had never even heard of Wegener's before my diagnosis.

[jakekell]

Me either, it has been 9 years this month since I was told I had it. CC thinks I could have had it since the late 20's or early 30's, however the familiar story nobody took my symptoms seriously until I turned 60. I went totally deaf, etc. and looked like death warmed over. I think going deaf got there attention finally got some action and my hearing back with some damage. I am overall doing pretty good with the usual ups/downs we all have with wegs. I found this site last year and has help me so much with everyone having so much experience with wegs.

[brew22]

I am in Lansing Mi ..if you get this way..... You can meet another weggie in person!!! You are inspiring as you seem to be living a pretty good life!!Yours Susie

[jakekell]

Susie, I am doing pretty well and so grateful for it. I was really glad to retire 3 years ago as that took a lot of stress off my plate even though my boss was great to me. I would love to meet another weggie and will try to. We go through Lansing area to our daughter's home in Troy-Rochester area when back in MI, I wonder if there are many of us in MI with wegs.

[mishb]

Meeting with other weggies is awesome and I can recommend it to everyone.

I have met probably 15 other weggies (including Inge) in the past 12 months and it is just like we have been friends or family, forever.

I hope that you and Susie and others get to catch up for a cuppa and a chat soon

[jakekell]

Wow you have met 15! Yes I would love to meet Susie and have a cup of coffee, won't be until winter is over as in Florida for the winter. I see your in Melbourne and just wondering if all of you are in one general location?

A big wig doc at a university in the US was telling my nephew that a lot of Scottish people have larger numbers of auto-immune diseases. Wondering if you ever heard that, as both side of my family came over from Scotland settling in the US and Melbourne/ New Zeeland. We are only 2nd generation here in the states and know a lot of Scotts have settled in Australia so just wondering think there is anything to that?

My brother and all of my cousins except one in our generation has an auto-immune disease, all different. We all have children (grown) and now they are showing signs of problems that docs think will one day expose themselves as an auto-immune.

Mary

[mishb]

Hi Mary,

No, we are from all over Australia.
Australia has a population of approx. 23 million.

We have a facebook group with 130 members that have WG from all over Australia and New Zealand.
From this group we have 35 members from Victoria, which Melbourne is the Capital. There are approx 7 million people in Melbourne, so therefore not from the same location.
Out of the 15 I have met, One has been from Western Australia, three from New South Wales, two from Queensland and 9 from Victoria.

Have yet to meet the Chief Kahuna (Andrew) :wink1:

I have heard that in some places (I thought Ireland or Wales was one) that WG is more prevalent in one area, but so far it hasn't seemed to have been the case in Australia.
There are so many reasons for AI conditions now, unfortunately :sad:

[jakekell]

I am sure your right that there are so many reasons for AI today. I was told that some of my family was in the Wales region so you maybe right about that.