Do you really living with PWS? - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-24-2005, 04:23 AM
hankbartenbach hankbartenbach is offline
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Default Do you really living with PWS?

Hi everybody,

I was wondering how many people really can say they know how it feels to live with PWS. Since there are so many kinds of PWS, I would like to know how you live with it. If it is on your face, (in my case) how does it effect your day by day life, or if it is in different areas where people can not see it unless you show them. Do you go to the end of the world to remember to cover up your PWS so nobody can ask questions, or make comments.

I have no choice to live with PWS on my face day by day, I can not cover it up with make up as well as others, because my PWS is puffed out and with make up on it looks like I have three very large bruises. Plus, I am a guy and there is very mixed feelings about guys wearing makeup, so I only do it in very very rare conditions.

Anyways, I deal with pointing, staring, questions, name calling, laughing, etc, etc on a daily basis anywhere I go including at work when I am out on the stores retail floor. I admit it was allot harder when I was in grade school then it is now, coming home crying daily because everybody made fun of me because I was different.
I learned to let it roll off my shoulders and not let it bother me, if it is a child I educated them so they will not be affrad to make friends with other people with birth defects.
Personally I think my PWS has made me a better person with in myself. It keeps me open minded aswell.

Parents can help comfort the feelings and try to understand, but they really do not, because they do not go thru day by day, every day of their life. I have to look at mine everyday I look into the mirror, but after awhile you and your family get use to the condition, and greatfully do not treat you differntly.



If anybody would like to share their story about how the live with PWS or choice not to live with it and keep it covered, I would like to hear from you.

Hank
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  #2  
Old 01-25-2005, 05:19 AM
vlifsey24
 
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Default Re: Do you really living with PWS?

Hank,
This really doesn't have anything to do with what you were asking but my son is two years old and he has PWS on the left side of his face, head, and neck. I often think about what it will be like for him when he starts school and gets older. I want him to be a strong person and be confident. Do you have any suggestions on what I should tell him? Did your parents give you any advice that has helped you ?
The reason I'm asking you is because you seem like you have alot of self confidence.

Thanks,
Valerie
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  #3  
Old 01-25-2005, 07:51 PM
hankbartenbach hankbartenbach is offline
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Default Re: Do you really living with PWS?

Hi Valerie,

This is part of what I was talking about.

Just make sure you give him lots of loving, and always tell him to be himself and nobody else can change that. One thing I strongly recommend is if you have other kids "do not" treat him any differently then the rest. It will back fire. I happen to me. My parents kept me very sheltered, and I suffered for it. I did come home allot crying when I was in elementry, but the kids at school will get use to it as they grow up with your son. I then became pretty popular. I stayed in the same school district the whole why thru grade school. That helped allot.

I hope this helps, if you have any other questions please ask.

Hank
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  #4  
Old 02-08-2005, 06:32 PM
kevin
 
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Default Re:Living (coping) with PWS?

This is my first post and actually my first visit to the site as well.

I guess I should start by giving a description of myself. I'm 36 years old and have a very large PWS that covers my entire left arm, hand, the left part of my chest which is also mirrored on the left side of my back.

I've been having laser treatments for 5 years, with very slow progress. Everyday I wish the current technology was available at the time of my birth. That said, everyone with children having PWS please have them treated as soon as possible. They will be most grateful.

Back to the progress being made. My chest and arm have improved, so much so that with continued treatments I feel I will not have any worries when I'm older. However, I do have concerns with my hand. The vessels are pretty dense and are very stubborn. Treatment is much more painful to this area and recovery is uncomfortable. I fear losing range of motion in my hand, not to mention the cosmetic side of it. As far as my back, my first treatment will be made next week Tuesday (Feb. 15th) To be honest, I've waited so long to treat this area because I can't see it!

OK, now to the actual subject of Hank's thread. How do you deal with PWS? As I age, unfortunately, I've become more conscious of my birthmark. In the summer I will wear long sleeves when it's 80 degrees out, my left hand is constantly in my pocket, etc. I sometimes want to feel bad for myself because I work out and try to keep my body in good shape, and it drives me crazy that I can't take my shirt off as much as I'd like! Wanting to be vain, how ironic! Another good example of having to deal w/ PWS, I recently married (June 25), and I asked if it was ok to have my wedding band placed on my right hand instead of the traditional left hand. I was hoping there wasn't any symbolism with the left hand and my priest said that either hand is fine and that in Europe it is customary to have it on your right hand anyway. So, everyday I'm reminded of my difference in appearance. I just try to cope with it the best I can.

I'd share a photo of my birthmark, but I'm so conscientious that I'm hardly captured on film with the PWS showing.

Two things I'd like to add before I sign off:

1.) The little boy that had treatment on his face (I believe he may have glasses) really made me feel good, I could feel tears welling up - HE LOOKS FANTASTIC!!

2.) To the young lady from Singapore, forgive me for forgetting your name, you are a very pretty girl! Keep smiling!

I had immediate positive feelings to every other person that posted or displayed a picture but I just don't have the time to comment on all of you. I could write for days...

Have a great day and thanks for the opportunity to write about a subject I don't normally talk about.

Sincerely,

Kevin
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  #5  
Old 02-08-2005, 10:00 PM
AnneinPa
 
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Default Re: Do you really living with PWS?

I'd like to add a few words.
I do not PWS. I do have an extensive venous malformation on the left side of my face. I'm sure that the issues are much the same.
My suggestion is the same as Kevin's. Treat early!
Children are often very cruel. Teenagers can be worse.
In an age where kids are considered outcasts for not having the "right" sneakers, I think it crucial to do as much as possible to help improve your child's appearance.
All the self esteem in the world can be shattered with the right words from peers. Coping skills are important, and they should be taught as early as possible. However, being left out of important social events such as proms can have lasting effects.
I was well into my thirties before realizing my appearance is not who I am.
I am a mental health counselor who does group therapy.
At 48, I still catch myself at times wondering what others think of my appearance. I don't think the scars ever fully heal.
The certainly can be minimized with the right tools..and the right treatment, of course.
I am also available to answer any questions from "an adult who has been there" perspective.
Handk-I'd love to chat someday. I, too, see drs. Waner and Berenstein!!
Anne

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  #6  
Old 02-09-2005, 02:05 AM
hankbartenbach hankbartenbach is offline
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Default Re: Do you really living with PWS?

Hi Kevin,

I am glad you are here on this site, we need more adults with PWS to share stories. I just wanted to let you know that your post was very nice. It brought back allot of memerys. I can not wait to hear more about you and what you have gone thru.

I agree with you about the kids being treated. They would be very grateful to not go thru what you and I did growing up.

I really hope your laser treatment starts to show progress. I have been doing laser treatment for 14 years off an on. I have PWS on my face and head.
I really look up to you, in finding your sole mate. I hope to find mine someday. I do not know if you are awere but your condition is not gentic so you whould not pass your PWS onto your children.

I can not wait to hear from you.

Hank
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  #7  
Old 02-09-2005, 02:19 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
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Default Re: Do you really living with PWS?

Hi Anne,

I am glad to see you on the site. I think your therapy skills might come in handy on this site. I give allot of advice from a personnal point of view, but you have both. I think you could give allot of advice to other adults and teens here.
A VM is similar to PWS, but not the same. We do go thru the same problem with other people pointing and stareing at school and in everyday life.

I agree with you 100% When you where talking about the whole image at school and fitting in with their peers. I was there in one point of my life.

I would be happy to chat someday. Email me when ever you get a chance. I have surgery on the 17th so I do not know when I will be back on email.

Talk to you later.

Hank
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  #8  
Old 03-06-2005, 08:35 PM
cv123
 
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Default Re: Do you really living with PWS?

I was honestly slightly saddened by reading these posts to hear that people are struggling with living with a PWS. I am 26 old year woman with PWS covering most of side of my face. I have had option of surgery and make-up, but I refuse either. I love who I am and I am not ashamed to show my face to the world. Yes, I have had some people give me hard time in my life and I used to come home from some places crying when I was younger. Yes, I do get stares and pointed at in public at times, but I try to never hide my face and I either do not acknowledge them, or just politely smile and move on. I realize that it is human nature to look when something is slightly different. I actually greatly appreciate someone just asking me if it is a birthmark, especially young children. I think that people have been easier on me because they know that I am not embarrassed by who I am. In fact, I NEVER had a student from school give me a hard time at all. It was always just people who I met in passing. I actually received countless complements from others at school for being proud of myself and they thought that my birthmark was beautiful. I think that my different experiences and outlooks comes largely from early experiences. My parents never made a big deal about it and they would always walk away when people were mean, and then tell me that they didn't know better and there was nothing wrong with me. If I came home crying, my mom would let me cry and then make go back out and face the world. They always gave me option of make-up or surgery, but I didn't want it. I am glad that my parents never had my birthmark removed when I was younger (they tried but technology was not successful), because it has formed my personality and gave my the strength in life and confidence that I have today. My heart goes out to others though that do struggle and I wish you the best of luck.
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  #9  
Old 03-07-2005, 01:09 AM
hankbartenbach hankbartenbach is offline
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Posts: 538
Default Re: Do you really living with PWS?

Hi cv123,

I want to first welcome you to the Site, second I want to thank you for your imput on this topic. As you already know I am 22 years old with PWS on the face.

I do understand allot of what you where talking about, and allot of it does relate to me. My parents made me go to treatment when I was a child. They use to hold me down to do the surgery. Now I have no choice but to continue laser treatment because my PWS is growing. (hyperplagia in my lip, nose, and eyebrows). Laser treatment was not effective for me either. After 14 years of it I gave up, but I have had plastic surgery now to reduce the areas.

I agree with you my PWS has made me a better person, people can not always see that unless they give us a chance to show them who we are. Even for a guy I have to say I have used make up to cover my PWS, but it just does not feel right. The adults and the negativity torwards the PWS is what bothers me. Children on the other hand do not understand, and when a child comes up and asks me I educate them so they will not be affraid. Someday they might meet a person their own age with a birthmark and become friends. Parents get embaroused about it, but I tell them it is not the childs fault, they have not had sience classes yet they do not know what a birthmark is.


Again, thank you for sharing your opinion and I hope to hear more about you and your positive reinforcement.

Hank
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  #10  
Old 03-11-2005, 10:16 PM
bethhahn
 
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Default Re: Do you really living with PWS?

Hi All,

Just to introduce myself: I am in my 30s and have a large birthmark covering my entire left leg. I live in NYC so hope to make an appointment with this Dr. Waner next week. I haven't been to a specialist in ages but want to get it checked on, see if there's any new treatment, &etc.

Living with a birthmark. Sigh! I think we're all very brave. I felt quite alone in that as a child. It definitely affected my idea of my own beauty for many years. To the present--that aspect is much easier. My leg swells sometimes, and to deal with that I do a lot of yoga. It seems to help a great deal. To be honest, yoga has allowed me to take off my shoes and expose my ankle and leg, something that I did not want to do for a long time. I think that will tell you a great deal about my own experience with a birthmark.

Nice to meet you, and I will report on Dr. Waner after an appointment. If anyone else has been to Dr. Waner, I'd love to hear from you about your experience, birthmark, and treatment.

Thanks for this opportunity.

Best,
Beth
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