New group - Vascular Birthmarks Foundation Forum
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Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Adults Living with Birthmarks

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  #1  
Old 03-11-2006, 11:13 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default New group

Hi everyone,

This section is to talk about adult individuals or parents of adults living with Vascular Birthmarks.
Any parents that might want to know long term/ future issues of what to look for as your child gets older please ask as well.

I would be happy to answer any questions anybody might have and there are other adults with different conditions then me that are on the group that are willing to answer your questions as well.

Hope to talk to you all soon.

Hank
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  #2  
Old 03-12-2006, 01:49 AM
KristieinStMarysGA KristieinStMarysGA is offline
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Join Date: Feb 2005
Location: St Marys GA
Posts: 132
Default Re: New group

Hank,

What an awesome Idea!

Hopefully this will be useful to parents and newly diagnosed adults.

Kristie
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  #3  
Old 03-16-2006, 11:05 PM
eprmo eprmo is offline
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Join Date: Dec 2003
Posts: 149
Default Re: New group

HI Hank,
I wanted to* mention my study here,,if that is OK,,it is on the front page of VBF..but sometimes people don't always read through the whole page..(by the way, the study is not affiliated with VBF, it is a completely independent research project)

But, it's for anyone over 14 who grew up with a facial hemangioma only (no PWS) and did not receive any treatment to correct it until after the age of 14.. All any participant would need to do is answer some questions, and of-course their identity remains anonymous.The study is a psychological study and it was approved by The Washington University School of Medicine in St. Louis, MO.
Please feel free to contact me for information and I'd gladly explain more about it. Also, on the front page of this web site, you can read about it too...

I think this forum is a great idea, and I'd gladly help if you need me.

Elissa Rifkin
Developmental Specialist-VBF
psyelectro@aol.com
studyvb@aol.com

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Elissa Rifkin
VBF Developmental Specialist
psyelectro@aol.com
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  #4  
Old 03-17-2006, 03:01 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: New group

Hi Elissa,

No problem. Research and getting our awareness are my two favorite things to do in this world.

Say, have your daughter ever considered coming on the group? I would be interested in hearing what she has to say about living with a Hemangioma for as long as she did. Ask her and see what she thinks.

Hank
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  #5  
Old 03-17-2006, 01:13 PM
eprmo eprmo is offline
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Default Re: New group

I'll mention it to her but,,right now she is preparing for ACT's..SAT's...AP..SATll's.. and every other test known to man!!!!!!!

remember,,the whole college process..... I get tired and anxious just writing about it...


Elissa
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Elissa Rifkin
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psyelectro@aol.com
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  #6  
Old 03-17-2006, 04:48 PM
hankbartenbach hankbartenbach is offline
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Location: Nebraska
Posts: 538
Default Re: New group

Oh yes I remember those days.

Hank
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  #7  
Old 08-01-2007, 03:01 AM
apbrown apbrown is offline
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Join Date: May 2007
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Are you all still out there??
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  #8  
Old 08-26-2008, 02:30 AM
tinks mom tinks mom is offline
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Join Date: Mar 2007
Location: I live in North Carolina
Posts: 1
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Hello,
I have a four year old daughter who has had eight surgieries to correct her beard shaped Hemongioma. She has alot of anger, and rage. I try to help her the best way I know, but sometimes it's not enough. Could it be all of the surgieries have an effect on her now. Help tinks mom
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Hello, I am the mother of a five year old little girl that had a beard shape H. She has had 10 surgieries two in NC and 8 in NY with Dr. Waner. She still has a ways to go but she is able to eat & drink alot better.If any one out there has a chlid that has or had a beard shape H please contact me. I have some questions about the bottom lip? Thanks
tinks mom
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  #9  
Old 08-28-2008, 03:37 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
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Hello Tinks mom,

I am not sure if the actual laser treatment is what is making her angery. I know I was never happy with my parents when they made me go. When I got older I could not be mad because I took myself to treatment appointments. I realized when I was a teenager why they were doing it where when I started when I was five years old they did not tell me very much about why I had to go get laser treatment. I think I would have helped.

I would suggest contacting Elissa Uretsky- Rifkin (who posted in above messages. She is a Developmental Specialist, plus she has a daughter that either had or has a hemangioma. I am not sure if she has had it removed.
You can either message her from the link above or on the front page of this website she has a link to ask her questions.

I hope this helps find you some answers.

Hank
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  #10  
Old 05-05-2010, 01:59 PM
fairbaker68 fairbaker68 is offline
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Join Date: Apr 2010
Posts: 1
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I have never received a response from the docs here..Has anyone ever seen a weird birthmark like this...Going to doc soon because my primary said that there is a vein going inward on my arm any response would be appreciated..Don't know if I can get a pic posted...how do you add attachments
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