Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Adults Living with Birthmarks (http://birthmark.org/board/forumdisplay.php?f=19)
-   -   New group (http://birthmark.org/board/showthread.php?t=1818)

hankbartenbach 03-12-2006 12:13 AM

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

KristieinStMarysGA 03-12-2006 02:49 AM

Re: New group
 
Hank,

What an awesome Idea!

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

Kristie

eprmo 03-17-2006 12:05 AM

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


hankbartenbach 03-17-2006 04:01 AM

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

eprmo 03-17-2006 02:13 PM

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!!!!!!! :o

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


Elissa

hankbartenbach 03-17-2006 05:48 PM

Re: New group
 
Oh yes I remember those days.

Hank

apbrown 08-01-2007 04:01 AM

Are you all still out there??

tinks mom 08-26-2008 03:30 AM

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

hankbartenbach 08-28-2008 04:37 AM

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

fairbaker68 05-05-2010 02:59 PM

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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