Port Wine Stain - Page 2 - 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.
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
  #11  
Old 09-09-2005, 04:19 AM
clairesmum
 
Posts: n/a
Default Re: Port Wine Stain

Hi Missy & Clara

Claire & I are off to Sydney next week (15 Sept) for Claire's next tx at Sydney Children's Hospital. There are about 4 doctors working out of SCH, but as I said with limited theatre time. Our doctor is lovely, and if there is anything you would like me to get from her or I can leave my email address and ask people to contact me, via email when they have their tx's, saying we are trying to set something up etc, please confirm with me, what details you would like to put forward to these parents.

Clara, we are corresponding with someone from this site also in Melbourne. Their daughter is being treated by Dr Beckhor. We are going to meet them in a couple of weeks when they visit Qld.

Missy I can email you any details about our hospital system, just let me know.

Catherine (Claire's mum 2y11m facial pws)
Reply With Quote
  #12  
Old 09-09-2005, 11:20 AM
imported_missy imported_missy is offline
Member
 
Join Date: May 2002
Posts: 80
Default Re: Port Wine Stain

Catherine,

God bless you!!

ANY resources you can get from Sydney Children's Hospital would be most welcome. Are the physicians you're seeing there listed on
http://birthmark.org/physicians_list.php

If not, I'd surely like them to be.... at the very least! They'd need to email their permission and contact details to contact@birthmark.org.

Some details about the hospital system would be great, but we'd like to focus on what to do when children are either denied treatment or treated later than they should be. Here, we call it an Appeals Process, but I'm so ignorant on Aussie's system.... my ignorance is astounding!

I've tried to put a bug in VBF's ear about starting VBF Australia! Parents who would be willing to share stories and photos with us would be most welcome. Sometimes, the only thing that comforts a parent is finding that they are not alone in their worry and frustration.

Anything you can send would be gratefully received by me!

And thank you very much!!

Missy
Reply With Quote
  #13  
Old 09-11-2005, 08:31 AM
clairesmum
 
Posts: n/a
Default Re: Port Wine Stain

Dear Missy

Our hospital system as two aspects. A public system and a private system. All Australian's are issued with a Medicare number and have access to all public hospitals (Government run). We can always go private, but unless in a private health fund we need to pay, and then there is usually an excess applicable anyhow.

We are extremely lucky in that our treatments with GA are covered under Medicare. We are not out of pocket in any way. Here in lies the problem with the system, that there are minimal theatre spots to cover all the children needing treatment. Priorities, I believe, are extended to smaller children with facial b/marks. I am sure there are some procedures available under private health, but not in the state where we are. (That is another complete subject about our slack state govt hospital system). Treatments are not available until at least the child is 6mths old because of the requirement of GA. Our doctors will not do a laser tx on a child's face without GA.

We do have the option to nominate private for our doctor when we go, but we don't have private health insurance. I will ask the other parents how they are going with private health, and if pws tx's are being covered by their insurance.

Our doctor is not on your list, and neither are any that use the Sydney Children's Hospital. And this is where it is hard for the Aussie to find doctor's over here, because our doctor's aren't listing themselves to be found, and our GP's rarely know where to look for a vascular dermatologist.

If there's anything else, please let me know.

Could we start a heading titled something about Australia so other Aussie, will look automatically at it, to see who of us are out there.

Catherine (claire's mum - facial pws)
Reply With Quote
  #14  
Old 09-14-2005, 03:01 AM
Clara
 
Posts: n/a
Default Re: Port Wine Stain

hi CAtherine,

I am also being treated by Dr Beckhor in melbourne, he's really good, and the only one in melbourne(along with dr Pascoe). They are listed on this site. I have also started corresponding with some young people with PWS.

hope treament with your daughter is going good,
Clara.
Reply With Quote
  #15  
Old 09-14-2005, 03:07 AM
Clara
 
Posts: n/a
Default Re: Port Wine Stain

Hi MIssy,

ahh, i understand what you mean now. sorry, I didn't really think about that. The doctors i go to (dr Beckhor and DR margaret Pascoe) are listed on this site, and they are extremely good. I have a medicard, in which i can claim money back from the treatments which are about $300aus per treatment. I have recently had the treatments done by some young doctors, which is good. You can go to dr beckhor's rooms in boxhill, or the royal childrens hospital in the city. I just go to dr bechkor's rooms and they have the laser's there.

i'd love to help out with anything else you need,
thanks,
Clara.
Reply With Quote
  #16  
Old 09-14-2005, 10:33 AM
Clara
 
Posts: n/a
Default Re: Port Wine Stain

Hi Missy,

I've spoken to Linda and Glenda about an Australian site for VBF. I also know others who'd love to help/join.

I find that our system here in melbourne is really good. The doctors are listed, and I don't have to wait too long for treatments. When i go to get treatments there is usually alot of people, the doctors do it quick, in and out. I have private health insurance, and laser treatments are covered. The people that i have recently spoken to have the same, (both adults and parents with babies), they never had to wait too long for treatments. And, yes you are right about doctors telling parents that the PWS will fade, as that is what my mum was told. Also, you are right about doctors/medical students not learning about PWS, as I study biomedical science (which is to do with medical research), and it has never been mentioned. At the moment topics such as cancer are the big areas for study.
Thanks,
Clara.
Reply With Quote
  #17  
Old 09-20-2005, 11:42 AM
imported_missy imported_missy is offline
Member
 
Join Date: May 2002
Posts: 80
Default Re: Port Wine Stain

VBF Australia is now on my to-do list!!

It will be nice to have country-specific information, I hope. Anything you can send my way, send it!!!

You have been wonderful already. I'll be glad to get this off the ground!

YEA!!!

Missy
Reply With Quote
  #18  
Old 09-21-2005, 10:15 AM
Clara
 
Posts: n/a
Default Re: Port Wine Stain

hi missy,

sure! what ever you want tell me, and i'll find out. I'm having trouble writing a story, i only get up to half a page!

Thanks,
Clara.
Reply With Quote
  #19  
Old 09-23-2005, 06:59 AM
clairesmum
 
Posts: n/a
Default Re: Port Wine Stain

Hi Missy

Just let us know. I would love to assist you also.

Catherine (Claire's mum)
Reply With Quote
  #20  
Old 09-23-2005, 11:20 AM
imported_missy imported_missy is offline
Member
 
Join Date: May 2002
Posts: 80
Default Re: Port Wine Stain

I'll take anything at this point LOL Thank you so much for the offer of help. I'm sure I'll be contacting you!

Missy
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

Similar Threads
Thread Thread Starter Forum Replies Last Post
Can a port wine stain cause physical pain? Jennyjuju Port Wine Stain Help and Resources 3 12-10-2011 01:53 AM
3 week old daughter diagnosed with Port Wine Stain elip Port Wine Stain Help and Resources 8 11-22-2006 05:06 PM
Port wine stain garcia03 Port Wine Stain Help and Resources 1 06-21-2006 03:17 PM
Lasting Laser Therapy of Port Wine Stains purplecolor Port Wine Stain Help and Resources 22 09-30-2004 07:38 AM
My Port Wine Stain Story myportwinestain Port Wine Stain Help and Resources 0 01-29-2003 01:50 AM