Port Wine Stain - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

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  #1  
Old 08-09-2005, 01:29 AM
Clara
 
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Default Port Wine Stain

Hi everybody,

my name is Clara, and i am new to this forum. I have a port wine stain on my upper lip, and have had six laser treatment so far. It has lightened about 70%. I've never spoken to anyone, or met anyone in the same situation. I am actually from Australia, and i was wondering if anyone here is from Australia, this is the only support site that i could find. There's not really any groups of such here!

I've only been logged on here for 5 days, and everyone seems so supported, also Hank-you are very supportive.

Thanks heaps,
Clara.
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  #2  
Old 08-09-2005, 02:07 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Port Wine Stain

Hi Clara,

Glad to see you posting more.
I do not know if there is anyone on here from Australia.
I will do some searching for you though to see if I can find anyone.

I will talk to you soon.

Hank
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  #3  
Old 08-12-2005, 01:17 PM
imported_missy imported_missy is offline
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Join Date: May 2002
Posts: 65
Default Re: Port Wine Stain

Hi Clara and welcome!

When you get a chance, please sit down and drop a line to contact@birthmark.org or use our contact form at:
http://www.birthmark.org/contact.php

and let us here at VBF know who is doing your laser treatments. We NEED way more resources for Aussies!

Thanks!

Missy
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  #4  
Old 08-21-2005, 12:01 PM
Clara
 
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Default Re: Port Wine Stain

Thanks Missy,

sorry it has taken me so long, I have been sick for two weeks. I'll check those sites now. I agree, there needs to be more resources for us Aussies!

Cheers,
Clara.
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  #5  
Old 08-23-2005, 01:44 PM
imported_missy imported_missy is offline
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Join Date: May 2002
Posts: 65
Default Re: Port Wine Stain

Clara,

Thanks very much! I'd love to have a contact to work with in Australia to find out about doctors and resources there. It's much needed and you can't believe how much mail I get lately about the lack of it!

Missy
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  #6  
Old 08-27-2005, 12:31 PM
clairesmum
 
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Default Re: Port Wine Stain

Hi Clara & Missy

I am also in Australia (Gympie - Qld) and know a few people with b/marks also over here. My daughter has a facial pws that covers mainly her right side from jaw to level with her eye. Her right eye is involved down the middle of her nose to top lip, then all of chin, bottom lip, gums and a patch on her left cheekbone. She is all okay with glaucoma checks etc and having laser 3 times a year in Sydney.

If I can be any further help please let me know. We need all the help we can get out here, especially us in Qld, because all the kids have to travel to NSW for GA and laser, and it is clogging up their hospital system, and laser appts are impossible unless you are a baby/toddler and already in the system.

My email is bcparker@dodo.com.au

Catherine (Claire's mum 2y10m facial pws - 8 laser tx's so far)
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  #7  
Old 09-02-2005, 03:23 AM
Clara
 
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Default Re: Port Wine Stain

i'd love to help missy! The laser treatment here in melbourne, Australia, i would have to say are excellent. There are two places to go. The royal childrens hospital or Dr Beckhor's room in Box hill. The doctors are great, especially Dr Margaret Pascoe. Therefore, the treatment is great, but there's no support, no foundations here in Australia.

Hi Catherine,
I am from Melbourne. Be happy to help you in any way!


Thanks, Clara.
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  #8  
Old 09-02-2005, 12:49 PM
imported_missy imported_missy is offline
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Join Date: May 2002
Posts: 65
Default Re: Port Wine Stain

Clara,

If there were support in Australia, what would you like to see?

I've been talking to Linda about this and she knows of some people there willing to help us put together some resources. But I am ignorant as to how your health care system works, etc.

Tell me what you'd like to see in the way of support and I'll send it up the chain! We need to know what you want!

Missy
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  #9  
Old 09-07-2005, 06:25 AM
Clara
 
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Default Re: Port Wine Stain

Hi Missy,

I've been talking to Eloisa (PWS, got email from Hank), and we're try and see if there's more people out there who want to meet to talk about issues. As it turned out, we live close to each other and go to the same laser doctor at the royal childrens hospital in melbourne, Australia. We're gonna meet up, so we can have a chat of what's it's like to be born with a PWS. Hopefully we can get more people. So, when I say support, I think I mean, somewhere everyone can meet and talk. I'm not too sure if there's anything else in the way of support?

Thanks for all your help, really kind of you.
Clara.
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  #10  
Old 09-08-2005, 12:33 PM
imported_missy imported_missy is offline
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Join Date: May 2002
Posts: 65
Default Re: Port Wine Stain

Clara,

LOL

Sounds like a coffee shop moment going on there!

What we at VBF want to know is more about informational support. How can we get more doctors there to treat VB's earlier and earlier? We want to know who the doctors are, what training is taking place in medical uni's, what information we can get out there, and how to go about it.

Our mission at VBF is to provide informational resources. If we can get these to MEDICAL STUDENTS all over the world, more children will be treated earlier. The earlier, the better. Traditionally, hemangiomas, PWS's, and AVM's are almost not mentioned in medical schools. And, if they are, the students come out with a "wait and see" attitude that in some cases, make things worse than they have to be.

We have to reach doctors, parents, nurses with the information. Backed by up-to-date knowledge and methods, treatment can be easier on families and patients.

Missy
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