Irony

[freakyschizogirl]

I work as a Supported Living Worker for people with Prader-Willi syndrome. The cruel irony here is their syndrome is as rare as wegs (give or take a few thousand) and yet there is so much more awareness for their condition.

In June i am going to the Prader-Willi Association conference. Which is spread out over 3 days and includes activites for Carers and the people they support. Where's the Wegs conference? lol? Cant help but feel "what about me?" Where's my activity weekend? Be nice to meet us with us Weggies in the UK and i'm sure American, Australian and European Weggies feel the same. I know the Vasculitis Foundation has links on its website for support groups but its not nearly the same thing, especially as its not Wegs specific.

Porbably just me moaning here....

[drz]

Are you involved with the Essex Vasculitis support group?

How about the London Marathon to raise funds April 17th?

Any plans to do anything to promote awareness like give talks, pass out brochures, or wear your Weg t-shirt to the Mall?

[freakyschizogirl]

I'd wear my Weg T-Shirt to the Mall! and i dont think i know enough to give talks etc, lol.

Think i'm having one of those out in the wilderness days where it feels pretty lonely to be a Weggie.

[Sangye]

Aww, don't feel lonely.... We're right there with you.

[freakyschizogirl]

Thanks Sangye

[chrisTIn@]

The cruel irony here is their syndrome is as rare as wegs (give or take a few thousand) and yet there is so much more awareness for their condition.

In June i am going to the Prader-Willi Association conference....

Where's the Wegs conference? lol?
...Cant help but feel "what about me?" ....

Hi Fr.Schizogirl. Sorry to hear you feel alone. Hope you will be feeling better soon.

I never really heard of the Prader-Willi syndrome, so I googled it, and I tought about it for a while.

'Prader-Willi' is a genetic birth disorder. When a child with this disorder on chromosome 15 is born, the parents have no other option then to seek help. So the child and his parents are in the medical circuit right from the start.
That isn't the case in 'Wegs'. You can live a long healthy life before you really develop Wegs. That is a big difference with a disease that is there, right when you are born.
Maybe that's the reason that there's so much more awareness for this -also rare- disease? I just wonder...

Here in Holland we have an active patient-organisation, that give workshops, congresses and so on. I'm going there in march, I hope.

I sure hope you can find support in your own surroundings. Good luck Fr. Schizogirl!

[Sangye]

Freaky, a thought occurred to me... Most support organizations were started by people who wanted support themselves. Maybe you could organize a small vasculitis get-together? Nothing big, obviously. But maybe just a luncheon where you just gather to talk?

[Geoff]

Hi Sam, when I went to that talk at Cambridge I met about 13 other weggies and some from the Essex Vasculitus Group, apparently they are out and about organising stuff all the time. I guess its about time we took the plunge and muscled into the group. See you there?

[drz]

Hi Sam, when I went to that talk at Cambridge I met about 13 other weggies and some from the Essex Vasculitus Group, apparently they are out and about organising stuff all the time. I guess its about time we took the plunge and muscled into the group. See you there?

How far away are the Essex support group meetings or how much effort would it take for two of you to make such a meeting? Since many of us have serious hearing loss from Wegener's, how do support meetings work out?

[marta]

I was thinking about this and the fact that people are so often confused by auto-immune vs immune deficient diseases, hence us always getting advice on how to improve our immune systems to get better. Then I thought about bringing Auto-immune diseases as a group to the forefront of popular culture. I imagine if you took all the numbers of auto-immune disease sufferers and compared them to the more popular diseases out in culture like cancer for instance, I bet the numbers would be higher. Then they might start getting the attention they need. We're so segmented right now, but think about it, there are a lot of AI diseases. People just don't get them and there's going to be more and more, since the current belief is that many are trigerred environmentally. Just more thoughts that have been going through my pea brain.