Anyone in Queensland Australia out there - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

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

Reply
 
Thread Tools Display Modes
  #1  
Old 09-29-2005, 01:28 PM
clairesmum
 
Posts: n/a
Default Anyone in Queensland Australia out there

Hi there

My daughter has a facial pws and we have been travelling to Sydney for treatments. These treatments are going to stop now except for maintenance. We need people to contact us, so we can fight the Qld Health system to see if we can enable laser treatments under GA be available in Brisbane.

We know people are out there somewhere, but we (another Brisbane mother and I) would like to know how many. I have contacted Jeff Seeney (my state parliament member) and he is on our side and going to really look into this for us.

You can email me privately or via here if you can help.

Regards
Catherine (claire's mum 2y11m facial pws - 9 tx's todate)
bcparker@dodo.com.au
Reply With Quote
  #2  
Old 03-15-2007, 11:23 AM
Aussie legs Aussie legs is offline
Junior Member
 
Join Date: Mar 2007
Posts: 17
Default

Hi, I'm not from QLD but from Victoria and have laser treatment on my legs in Melbourne, if I can be of help just let me know. I thought I would just send you a message to know that their are Aussie's reading your letter.

Regards
Ann
Reply With Quote
  #3  
Old 09-24-2007, 02:34 PM
MelissaP MelissaP is offline
Junior Member
 
Join Date: Sep 2007
Location: Brisbane, Australia
Posts: 6
Default Reply to "anyone in Qld Australia out there"

Hi Catherine,
My gorgeous son Lucas was born 12 weeks ago with a facial port wine stain and we also live in Brisbane. After his birth I left hospital knowing almost nothing about PWS, our treatment options or what the future might hold for him. Needless to say I have spent hours on the computer searching for information like a woman possessed!! I feel so much more empowered now with a little information and education and would love to chat to you if you would be so kind, about Claire's and your journey - given I am still so new to it all. I am desperate to ensure we are seeing the best specialists (most experienced) in Brisbane...

We too are planning to travel to Sydney next April to begin laser treatment for Lucas. I have had a devil of a time trying to find out info about treatment here in Qld, seems that lots of people know very little - VERY frustrating for me!! I am toying with the idea of setting up some sort of local support/information group.

cheers
Melissa Pryor
Reply With Quote
  #4  
Old 10-02-2007, 12:12 PM
Charlotte's Dad Charlotte's Dad is offline
Junior Member
 
Join Date: Mar 2007
Posts: 19
Default

Hi Melissa,

I too am from Brisbane and my now 7 month old daughter has a PWS on the left hand side of her face. I have sent you a PM about our experience.

Kind regards,

Charlotte's mum
Reply With Quote
  #5  
Old 10-05-2007, 05:38 PM
swsc's Avatar
swsc swsc is offline
Member
 
Join Date: Feb 2004
Posts: 81
Default

The VBF has a Chapter in Australia. Perhaps they can be of some help.

Here is the website link: http://vbfaustralia.org/index.php and here is the contact page link: http://vbfaustralia.org/contact.php

Also, any doctor, hospital or other information you and others in Australia can provide for the website will be much appreciated.

Thanks,
Glenda Ethington, VBF Chapter Director
Reply With Quote
  #6  
Old 10-07-2007, 01:22 AM
rachael shields rachael shields is offline
Junior Member
 
Join Date: May 2007
Posts: 12
Default

Hi catherine,

I tried to email you personally but it bounced back to me - could you email me please....minham@bigpond.com

kind regards,

Rachael
Son - Hamish has Tufted angioma
Reply With Quote
  #7  
Old 10-22-2010, 07:57 AM
becnash becnash is offline
Junior Member
 
Join Date: Dec 2008
Posts: 2
Default

Hi I am after any information anyone can give me in regards to treatment for portwine birthmarks.

My little boy has just gone two. He has a portwine on a good 1/4 of his face. After I had him my pead gave me a referral for mater hospital to get it treated. After a 2 year wait we finally got an appt only to be told that they do not do it.

We are in Brisbane and have tried finding information on who does it and we are not getting very far. No one even seems to understand what I am talking about.

Thank you in advance for any info.

)
Reply With Quote
  #8  
Old 10-26-2010, 12:13 PM
SueBrisbane SueBrisbane is offline
Junior Member
 
Join Date: Oct 2010
Posts: 1
Default New To Brisbane

I have just stumbled on the site and seen that there are other parents in Brisbane.... We have just moved here, have a 14 year old daughter with a PWS and Sturge Weber syndrome (she now has glaucoma and is losing her sight due to the retina being affected!)

Just wondering if there are any support groups here and if you found Dr's to perform laser surgery that you could recommend? We have been under the care of a plastic surgeon but he uses the equipment in a hospital which has various disadvantages for us!

Please contact me if anyone is still out there...
suethom3@bigpond.com

Thanks
Sue
Reply With Quote
  #9  
Old 10-26-2010, 01:41 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,727
Default

Hi Sue,

It might take a couple of days, but hang in there.... parents will be in soon, I hope, to direct you to the right place.

And welcome!

Is there any treatment at all for her glaucoma?

Missy
Reply With Quote
  #10  
Old 10-27-2010, 10:13 AM
Charlotte's Dad Charlotte's Dad is offline
Junior Member
 
Join Date: Mar 2007
Posts: 19
Default

Hi Bec and Sue,

We are originally from Brisbane but have been living overseas for about 12 years. My three year old daughter has a pws that covers her cheek. She and her twin sister were born in Hong Kong and we commenced treatment there with the VBeam Perfecta laser when Charlotte was 4 months old. We originally considered the possibility of having Charlotte's birthmark treated in Australia (or the USA) and I was amazed at the lack of knowledge and resources available in Australia, especially in Queensland. I understand that there is a vascular birthmarks clinic with wonderful doctors at the Westmead Children's Hospital in Sydney and Dr Philip Bekhor in Melbourne also treats a lot of young patients with birth marks.

The only doctor I found in Queensland who seems to treat young children with the VBeam Perfecta laser was Dr Michael Freeman at Benowa on the Gold Coast. It has been three years since I looked into this so perhaps things have changed, although I am guessing from your posts that sadly there hasn't been a lot of improvement in the availability of treatment in Queensland.

We ultimately decided to have Charlotte's birthmark treated in Hong Kong as the doctor there came very highly recommended by doctors in the US and Australia. We moved to Singapore about two years ago but have continued to travel to Hong Kong for treatment as we are so happy with the doctor who treats Charlotte's birthmark. Charlotte has now had about 20 treatments and we are delighted with the results. Charlotte's birthmark is now a pale pink and only really noticeable if she is very hot or annoyed. People now stare at, and comment on, her beautiful curly hair rather than her birthmark.

Wishing you all the very best with your search for a doctor to help your children.

Charlotte's Mum
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump