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

[Aussie legs]

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

[MelissaP]

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

[Charlotte's Dad]

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

[swsc]

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

[rachael shields]

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

[becnash]

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.

)

[SueBrisbane]

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

[missy]

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

[Charlotte's Dad]

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