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Search: Posts Made By: imported_missy
Forum: Contact an Individual Privately, or join the Kid's Support Group 03-23-2006, 11:22 PM
Replies: 0
Views: 6,065
Posted By imported_missy
How to contact an individual or join the kid's support group

Contact Hank - living with Port Wine Stain http://birthmark.org/hank.php
Contact Kristie - living with Venous Malformation http://birthmark.org/kristie.php
Join Glen's Gang - Pen Pal/Support Group...
Forum: Port Wine Stain Help and Resources 12-14-2005, 11:38 AM
Replies: 2
Views: 1,393
Posted By imported_missy
Re: Two things.:)

Good to hear from you again! Thanks for keeping us updated!

Gabby is soooo cool, huh? How's the rest of the clan?

Hope your holidays are good!

Missy
Forum: Port Wine Stain Help and Resources 12-06-2005, 11:12 PM
Replies: 5
Views: 2,118
Posted By imported_missy
Re: makeup/pictures?

Go ask!

http://birthmark.org/expert/ask_the_makeup.php

She'll tell you
Forum: Port Wine Stain Help and Resources 12-01-2005, 01:17 PM
Replies: 3
Views: 1,521
Posted By imported_missy
Re: questions about PWS

Katie,

There is no evidence to support that birthmarks are hereditary, but research is always being done.

If you have shown no symptoms of KT, I wouldn't worry about it. Many people have PWS on...
Forum: AVM Help and Resources 11-01-2005, 02:18 PM
Replies: 4
Views: 2,184
Posted By imported_missy
Re: Effects of smoking??

Corinne,

LOL I love ZYBAN! And, it really does work. If you don't start again!

Missy
Forum: AVM Help and Resources 10-31-2005, 12:12 PM
Replies: 4
Views: 2,184
Posted By imported_missy
Re: Effects of smoking??

I know that smoking raises your metabolism. So, when you quit, your metabolism bottoms out. Steroids would raise your metabolism, too? Maybe your GP thinks that patches or gum will help raise your...
Forum: AVM Help and Resources 10-19-2005, 06:17 PM
Replies: 9
Views: 2,454
Posted By imported_missy
Re: Life expectancy?

Miriam,

One thing Linda has said is this:

"I need to see a picture. If over 40% of her body is hypervascular due to extensive lesions, she needs blood work done to rule out thrombocytopenia which...
Forum: AVM Help and Resources 10-17-2005, 01:33 PM
Replies: 9
Views: 2,454
Posted By imported_missy
Re: Life expectancy?

Miriam,

Linda Shannon DOES have some research resources on this and promised to get them to me as soon as she can find them. From what she said, it's in a book she owns and she says that she will...
Forum: AVM Help and Resources 10-17-2005, 12:02 PM
Replies: 9
Views: 2,454
Posted By imported_missy
Re: Life expectancy?

I have never heard that questioned before. Hmmm...

Actually, I'm more concerned that you get the treatment you need, whether it's for the VM's or the paranoia!! :)

I'm going to pass your question...
Forum: Port Wine Stain Help and Resources 10-13-2005, 11:57 AM
Replies: 0
Views: 1,281
Posted By imported_missy
New Paper for birthmark.org

One of our developmental specialists has written a wonderful paper for VBF!

Psychosocial and Emotional Issues for Individuals with a Port Wine Stain
http://birthmark.org/pws_strategies.php
2005...
Forum: AVM Help and Resources 10-12-2005, 11:35 AM
Replies: 1
Views: 1,715
Posted By imported_missy
Re: accutane + AVM

What other treatments for your acne have you tried?

I know two things about accutane... that it can cause birth defects if taken while pregnant and that you're not supposed to have laser,...
Forum: Port Wine Stain Help and Resources 09-23-2005, 11:20 AM
Replies: 22
Views: 4,770
Posted By imported_missy
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
Forum: Port Wine Stain Help and Resources 09-20-2005, 11:42 AM
Replies: 22
Views: 4,770
Posted By imported_missy
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...
Forum: Port Wine Stain Help and Resources 09-20-2005, 11:40 AM
Replies: 3
Views: 1,701
Posted By imported_missy
Re: Microskin in Australia

Catherine,

I'd love to hear more about this! Let us know if you research it any more or give it a try.

Missy
Forum: Port Wine Stain Help and Resources 09-09-2005, 11:20 AM
Replies: 22
Views: 4,770
Posted By imported_missy
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...
Forum: Port Wine Stain Help and Resources 09-08-2005, 11:38 AM
Replies: 4
Views: 1,653
Posted By imported_missy
Re: First Post - The ONE thing I wish I'd known about/done when I was younger.

Mallis,

I've had a long and frustrating week, but you've given me a great idea!

(Missy heading out to find the nearest mosh pit)

Great posts, you guys.

M
Forum: Port Wine Stain Help and Resources 09-08-2005, 11:33 AM
Replies: 22
Views: 4,770
Posted By imported_missy
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?...
Forum: Port Wine Stain Help and Resources 09-02-2005, 11:50 AM
Replies: 3
Views: 1,520
Posted By imported_missy
Re: Heyas sorry it's been so long...

Thanks for the update!

GET WELL SOON!
Forum: Port Wine Stain Help and Resources 09-02-2005, 11:49 AM
Replies: 22
Views: 4,770
Posted By imported_missy
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...
Forum: Port Wine Stain Help and Resources 08-31-2005, 11:53 AM
Replies: 3
Views: 1,520
Posted By imported_missy
Re: Heyas sorry it's been so long...

Jeni,

I don't know about the lymph nodes enlarging.... Glenda might know and if she doesn't chime in today about it, I'll email her and ask her. Jenny might know as well. That's something I'd like...
Forum: General Resources 08-28-2005, 08:01 PM
Replies: 4
Views: 2,170
Posted By imported_missy
Re: Submitting questions to the specialists

Hi there,

I checked the database and your question went through just fine. What kinds of problems were you having?

Thanks,

Missy
Forum: Port Wine Stain Help and Resources 08-25-2005, 11:18 AM
Replies: 20
Views: 2,947
Posted By imported_missy
Re: Can anyone recommend a good makeup to cover up PWS??

Anti,

Thank you! I love Estee Lauder makeup, usually. When I was first diagnosed with rosacea, it was one of the few brands recommended that wouldn't cause an additional irritation to my very...
Forum: Port Wine Stain Help and Resources 08-23-2005, 12:44 PM
Replies: 22
Views: 4,770
Posted By imported_missy
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...
Forum: Port Wine Stain Help and Resources 08-16-2005, 04:38 PM
Replies: 7
Views: 1,856
Posted By imported_missy
Re: swimming after treatment

A quick call to the laser doc's office should answer that. You might have to leave a message for the nurse there, but those are the people you should ask. They know what kind of laser, settings, etc...
Forum: Port Wine Stain Help and Resources 08-16-2005, 04:33 PM
Replies: 20
Views: 2,947
Posted By imported_missy
Re: Can anyone recommend a good makeup to cover up PWS??

I went to the local Penney's for some derma blend as well. They did help me find the right shade for my face (I have rosacea, not a PWS). However, even as an adult, I found it a pain having to apply...
Showing results 1 to 25 of 65

 
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