22 years and its still there. - 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

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

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
  #1  
Old 08-03-2005, 09:11 PM
JenniDoll
 
Posts: n/a
Default 22 years and its still there.

I am 22 years old and I was born with what I believe to be a PWS on my forehead above my right eye and goes up my scalp. I remember when I was younger and I would go to my pediatrition and he once told me that he knew a girl that had the same thing and hers faded away as she got older. Well, when he told me that I was thrilled I couldnt wait to see how well it faded. Boy was he wrong! Guess what, it's still there . It was torture growing up. I would get made fun of so bad i would come home everyday crying. Kids would say that I have a map on my head and that they were lost and need to see it for directions. They would say that it looks like the state of NJ. Which is where I am from. For about 15 years of my life I have woken up every morning and the first thing I do is put on my make up and fix my bangs so that it was covered up just so people would look at me normal. I have had the same hair style all my life. I have never had any surgury done to try and get rid of it. When I was born my parents looked into it but my parents were scared because of what the effects would be. Now with technology these days its worth getting done. I just dont have the money to do it. I am engaged and will be married on Sept. 9, 2006. I would like to have it removed before I get married that way my day would be perfect. I have heard though that yes the laser will make it fade but in time it will return and will have to have treatment for the rest of my life. Is this true? It took my fiance, well at the time b/f 6 months to notice that I had one. But thats because I cover it up so well. I know that no one knows its there but I do my self confidence level is low. Even my little cousins that have known me since they were born didnt know that I had one until the other day in the pool. Thats the other thing I limit myself to what I will do and won't do. Wether it be swimming,boating,jetskiing. I won't do anything that will mess my bangs and my make up to the point to where its visible.* I just wish I didn't have this so that I can live a normal life.
Reply With Quote
  #2  
Old 08-03-2005, 09:41 PM
nickbar nickbar is offline
Senior Member
 
Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054
Default Re: 22 years and its still there.

Jenni,

Welcome to the group! Thank you for sharing you story and I think you'd be surprised how many people walk in you shoes. I would encourage you to join in the discussions as well on www.birthmarks.com. PWS advice, support.

As a child unfort. your doctor did not know the difference between pws and hemangiomas. It sounds to me like the doctor thought you had a similar birthmark (hemangioma) that would fade away. PWS do not. Depending on the grade level of the pws will determine how well laser will work and for how long the results will last. I would encourage you to see a vb specialist that has experience treating with laser.... the doc will be able to provide more info on the grade level and the expectations of the laser. Many patients are able to get insurance to cover the laser treatments. I would encourage you to look into this. I can provide you with letters and documents that others have used to win approval of surgery and other treatments.

Congrats on your pending wedding! Don't let the birthmark take way from you living your life to the fullest! Easy for me to say....but I hope you can find support here and the birthmarks.com group to help you get past some of the trauma you endured as a child. Not an easy task...but know we are here for you!

Corinne
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
Reply With Quote
  #3  
Old 08-04-2005, 04:54 AM
kimberlyann
 
Posts: n/a
Default Re: 22 years and its still there.

Hi Jenni! Welcome. I too share the alot of the same feelings you have because of my pws. I'm 32 have my pws on almost my entire face,neck,ear,legs,scalp,lip,eyelidand gums. It was really hard for growing up too! I wore make-up from 5th grade on but then I was teased for wearing too much of that! It needs to be heavy in order to cover it. I am also new to this site and i am so glad to have found it. I met a wonderful guy named Hank and he suggested i see dr. Waner in NYC and I did on Aug !st. It was an incredible experience. I got to meet Hank and Geoff Ritchie, check out their websites they are inspiring, sweet, wonderful people. I haven't revealed my pws to anyone but family(I'm married with 4 kids to a good looking husband by the way)and when i took my make-up off in the office in front of geoff, hank and their families, I have to say for the first time ever in my life I felt comfortable being me! I was so blown away by this experience I wish I had more time with them. It felt so good being with people that understand how I feel. I also learned though that my birthmark ages as I do and it is starting to cobble in some areas. That was my worst fear. Dr. Waner said he can help and I am Having surgery on Oct.5th! I just thought my pws was just a mark and now I'm learning it is so much more involved than that. I suggest you find a Dr. on this site, all the others in my life knew nothing, even my dermatologist!I am just starting to come out of my shell and accept who I am. It's crazy but I sometimes think about what It would be like to not cover it up! I hope the surgeries will help lighten it and someday I will feel comfortable again, like I did in the office the other day! I am learning so much! Good luck to you with everything and please feel free to e-mail me anytime! Thanks for sharing!......Kim
Reply With Quote
  #4  
Old 08-04-2005, 05:11 PM
QCBirthmark
 
Posts: n/a
Default Re: 22 years and its still there.

Welcome to the forums JenniDoll.
I don't have a PWS but my daughter who is 5 does. My heart goes out to you. Let me say congrats on your upcoming wedding!

Laser is the way to go to get rid of the birthmark, and as far as the money situation goes, you might be able to find help from your local city government aid. I am not 100% on that though. If you were to have surgery in one week from today the birthmark unfortunately wouldn't be lighter by your wedding. My daughters birthmark after surgery is much darker for about 2 weeks, then goes back to her original color. Within about 6 weeks I usually see a change in the color of it. I know that isn't what you wanted to hear but at least you are able to be informed. I won't pretend to understand what you are feeling or going through bc I can't. All I can say is that you have found a great support system here hon. I love these forums and I just joined last week. The group of people here is wonderful, they will answer your questions, listen to you, and give you advice.

Good luck w/your upcoming wedding.

Jeni

PS congrats to you Kim on your upcoming surgery.
Reply With Quote
  #5  
Old 08-04-2005, 09:01 PM
JenniDoll
 
Posts: n/a
Default Re: 22 years and its still there.

Thank you all so much for replying to my post. It makes me feel so relieved knowing that there are people out there going through the same thing as I am. I will definitly look into finding a doctor on this site. Hopefully by some miracle if I start the treatments soon it will be well faded by sept. next year. Congrats and good luck to you Kim on your upcoming surgury.

My heart goes out to your daughter Jeni I know what its like having a pws at a young age and kids can be VERY hurtfull. My grandmother always told me that if anyone ever asked me what it was just to reply " It's my Beauty Mark, thats what makes me so beautiful." Even though it was hard for myself to believe that I was beautiful. Its whats on the inside that counts.

JenniDoll
Reply With Quote
  #6  
Old 08-05-2005, 06:42 PM
QCBirthmark
 
Posts: n/a
Default Re: 22 years and its still there.

Thank you for your kind words Jenni. I must apologize...I didn't read the date of your wedding right. If you were to start treatments now I am sure it would be lighter by next september. (Boy do i feel like a goober) We have taught Gabbey to tell people that it's her birthmark and that no matter what she's always going to be beautiful. But I see in her at times how hard it is. She has started to stand up for herself more and more as of late.

But back to you. Please keep us appraised of your situation. I would really like to know how things are going for you.
Reply With Quote
  #7  
Old 10-29-2005, 05:57 AM
juliebeans
 
Posts: n/a
Default Re: 22 years and its still there.

Your story is 100% identical to mine. I actually thought I wrote that for a second. I too am a wizard of make up and have been covering my PWS for 10 years. I also position my bangs so that nobody knows I have one. I don't go swimming, work out in public, or go anywhere that my face may get wet. I don't go ANYWHERE without my makeup and I dread the summer because of the heat and what it does to my cover up. My (now ) husband did not know that I had a birthmark for 6 months. He didn't care at all when I finally showed him but what a fraud I felt like. It is a mental prison. I limit myself everyday. I miss out on so much. I started to get in removed in 9th grade but the patches for recovery were not a hit at my high school. Now that I am a stay at home mom I have time, I am going to see about getting it removed. Mine is also in the danger zones so I NEED to get it removed. Yes it is a life long maintenece issue. The parts that went away in 9th grade completely came back, but you just gotta do it if it is affecting your quality of life. LEt me know how everthing goes. I am 25 and in a year I don't want to be thinking about a stupid birthmark every second of my life!!
Reply With Quote
  #8  
Old 11-01-2005, 08:57 AM
Lucy784
 
Posts: n/a
Default Re: 22 years and its still there.

I am new to this site....I was born with a PWS on the right side of my face. I have undergone 40+ laser surgeries to try and get "it" off of my skin. When I wake up and I look in the mirror...sometimes I notice it and other times I do not even realize that it is there(kinda weird huh!). There are the good days and then there are the really crappy days..where I do wish I could just be like all of the other girls with perfect skin. I do feel special and I know that someone out there will look beyond this pink patch of skin, and realize that it is only skin and a little mark that has helped me be a better person and shaped who I am today. I read your post, and admire what you wrote. At the end of the day, you do not need to wear makeup and cover it up. I am not sure if your wedding has passed. I wish you the best of luck.
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