Face to Face Support Groups

[narelle27]

Hi All,
My 18 year old daughter has been recently diagnosed with Wegeners.
She has had approx 10 operations on her right ear which resulted in her loosing the hearing in that ear.
She now wears a bone anchored hearing aid as the only option was to close off that ear completely.
After finally thinking that all her ear problems were over, she began to show signs of ear disease in her Left ear.
Her specialist began to realize that there must be more going on.
Hence being diagnosed with Wegeners.
She was immedialtely put on 60mg of Steroides and 20 mgs of Methotrexate.
She has gained weight and now has the commonly named Moon face.
Shes really feeling depressed about the weight gain and the unwanted hair on he arms, face and back.
She could really use someone to talk to.
Is there a face to face support group he could attend that anyone knows about?
We really look forward to some feedback on this.
Thanks.

[mishb]

Hi Narelle and welcome,

I'm sorry that your daughter has been diagnosed with WG but I am glad you have found us.

There are many face to face support groups that I have heard of - what Country/State/area do you live in?

[narelle27]

Hi Michelle,
Thanks for the lovely warm welcoming :)
We live in Pinjarra , Perth, WA.

[mrtmeo]

Hi Narelle,
You can contact the Vasculitis Foundation below and they will get you in contact with the closest meetup groups.
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[mishb]

Narelle, we have some lovely people in WA who would be pleased to meet with you and your family.

If you are on facebook, check out our WG Australia and New Zealand Group.
The WA people are in this group and I'm sure you can all organise something.

https://www.facebook.com/groups/516643745050360/

[narelle27]

Thanks Michelle,
How do i go about joining the Facebook group?

[mishb]

Hi Narelle,

Just click on the link above and it should bring you to a request to join.

I have already mentioned you in the Group.

[narelle27]

I'm not sure what im doing wrong but i cant find "request to join"on the Facebook page?
Sorry for the inconvenience.

[mishb]

I'm not sure either.

I have sent you a private message

You will find it in your notifications at the top of the screen

[Debbie C]

" Good Day " Narelle..I am sorry to hear about your daughter having this disease at such a young age. The steroids are a necessary evil and once her dose is lowered her moon face will go away. But it does make you want to eat everything in sight and weight gain is just another side effect, Try to watch what she is eating and to excerise if possible,that should help with some of that. Glad you found us... sorry you had to but you are in good hands with Michelle. :)

[annekat]

Welcome, Narelle, and you have come to the right place to find info and support for your daughter and yourself. How fortunate that you live in Australia, since Michelle is there and can be so helpful in getting you connected with others there. I clicked on the Facebook link above and it did work for me, and had a "join group" button, but since I'm not in AU or NZ, I am not going to join. I'm sure you'll get it sorted out. And there are other Facebook groups we can hook you up with, and individuals on here who are "friends" with each other. If I can be of any help in that department, send me a private message with your FB username and I will suggest you as an added friend to some of the most active among us who will probably have seen you on here.

[mrtmeo]

Hi Narelle,
Sorry, thought you were in Washington state.
I should have done a search.
The vasculitis foundation may have world wide contacts, but not sure.

[annekat]

Hi Narelle,
Sorry, thought you were in Washington state.
I should have done a search.
The vasculitis foundation may have world wide contacts, but not sure. I think it does, or at least lists consulting docs all over the world. The "WA" threw me, too, being from Washington state. But the rest of the place names sounded a lot more like Australia, and I'd run into that issue on here before. I believe it means Western Australia, though I may be corrected if wrong.

[mishb]

I think it does, or at least lists consulting docs all over the world. The "WA" threw me, too, being from Washington state. But the rest of the place names sounded a lot more like Australia, and I'd run into that issue on here before. I believe it means Western Australia, though I may be corrected if wrong.

The WA throws me too, at times.
Yes WA means Western Australia over here.

I had to google Pinjarra, because I had not heard of it before.

[whatthewhat]

Hey, our weggie daughter would chat...she is almost 17 and currently has The Dreaded MoonFace. Michelle knows how to contact me on FB. If our daughter can help she will.

[im so blessed]

I wa dxed at 16 and remember how hard those days were. I needed my space alot as i fought it internally more. But having a support group like this would have been awesome!

[narelle27]

Thanks for that.
I'm very impressed with the level of support and kind words i have received on this site after only a a few days.
What a wonderful thing Michelle has done by instigating this support network :)