new member

Hi my name is Paul Im 34yrs old and have a port wine stain spanning from the top of my right ear to the base of my neck.I am happily married with a 9yr old daughter.Everything is fine until I have to do something where people might see my neck then my whole world simply falls apart.My wife is very supportive and says if people cant accept you the way you are thats their problem.Myself and proberbly several other members of this forum know its not that easy.Ive been down several roads including laser treatment but this didnt work.Ive recieved therapy this has made things slightly better but my confidence is still pretty low.Anyway Tuesday 9th jan is a big day Im going to a local organisation to try make up.Hopefuly this might give me and my family our lives back.May I please take this oppotunity to say how much of a relief it is to be among people who are aware of what im going through at last.Thankyou please feel free to reply .

hi paul- i'm new here too. i would just like to say good luck with the make-up, i hope it will give you the confidence and easy feeling that you are looking for! i agree with your wife though, she sounds like a smart woman!! my 2 year old son has extensive PWS, and i was just as thrilled to find out about this board as you were!! it really helps to be able to chat with people who are dealing with the issues that come along with PWS. i want to be able to tell my little boy the right things and make him know how beautiful and wonderful he is when he starts dealing with the self esteem issues... any ideas?

Sorry didnt catch your name but thanks for the reply.Obviously me having the pws is a little different I guess you will be playing a similar role to my wife.All you can do is be there for him.Encourage him to live a normal and enjoyable life.No doubt once Ive got my head round everything I will look back on a lot of wasted oppotunities.I guess what Im trying to say is things I didnt have the confidence to do because of my pws I could and should of done.If I could offer just one bit of advice it would be there isnt many people in this world that are truly happy with every aspect of life but they still able to achieve.Ok we may be visibly different that doesnt entitle us to be any less happy than any one else and still achieve.Hope this helps.

[hankbartenbach]

Hi Paul,

First of all welcome to the group.

If you have not seen anything on this site about me I am a 24 year old with facial PWS.

I can not agree more with your wife. I have always had the opinion that if someone can not except me because of my birthmark then I do not nee them in my life. They are just negative influence.
I have learned over the years to let the rude comments, pointing, staring, jokes, laughing, and questions be a every day thing in my life. I just let the comments go in one ear and out the other. As for children I turn to education to let them know that there is nothing to be afraid of.

I hope this does not upset you from what I have said already, but I hope what I am about to say will not make it worse.
I have used cosmetic make up twice in my life the last time just a couple years ago. It was given to me by a doctor cosmetalogist. The one down fall the make up did was it made me look like a ghost, and beliave it or not I got made fun of more with the make up then without. Mostly from people that knew me and it was such a big change.

So has your daughter or any of her friends been starting to ask you questions? How do you deal with it if they do?
The reason I ask is my feanca and I both want children after we get married in a few years.

Also, do you have any other health or physical problems that your PWS affects?
My PWS is involved into my top gum, pallet, throat, nose, scalp, eyes (creating vision loss), and hearing loss (involved in ear drum and nerve).

Has your PWS grown at all? (look puffy) The reason I ask is because mine has grown and laser treatment will not help the area that are this thick. I started laser treatment 19 years ago, and last year I had three plastic surgeries. If you would like to see pictures you can see them at my website www.hankspws.com

I hope some of this has help even though not all is positive.

Hope to talk to you soon.

Hank

Thanks for the reply Hank.Firstly in relation to my daughter and her friends reactions to my PWS.Well funnily enough they have never said anything to me directly.Its obviously just the norm for my daughter she doesnt bother at all.Her friends stare a little bit but as regards to saying anything they always ask my wife.Perhaps they sense how uneasy I feel.Saying that it cant be difficult to see I walk round with my neck sunk into my shoulders proberbly making it more obvious something is wrong.Secondly yes my PWS has spread slightly over the years and for as long as I can remember its always been very swollen and puffy behind my right ear and at times very painful internaly and externaly.Thirdly I hope you dont mind me asking .Have you always had this positive attitude toward your PWS or is it something that you have mastered over the years.Either way I think its fantastic and all credit to you my friend you put me to shame.What I would do to have that attitude. THANKS PAUL

[michelle.karim]

Welcome! Good to hear of new members. I hope your session on 9 January goes well. My son Sam is 10 years and has a PWS on his left hand and arm. He has been advised by hospital not to have laser treatment as it is not very successful on hands and is very painful due to the thin skin tissue and amout of swelling expected. Sam is quite "happy" with his PWS and says it helps him remember his left hand. I myself am worried as I know it will thicken with time. Just this week he had an episode where his hand swelled at school and was painful - I had to collect him. Our GP just prescribed Paracetamol and rest. I'm hoping the thickening will not affect his mobility or his confidence. The hospital have said he can start laser treatment as an adult but that it not as successful.

I was heartened to hear your story and that your daughter and wife are supportive. Kids are great and the majority are kind and caring. Good luck and let us know how it goes.

Michelle.

Hi Michelle.Youve hit the nail on the head when when you Sam is happy because at the end of the day thats all that matters.And the happier Sam is confidence will surely follow. thankyou Paul

[hankbartenbach]

Hi Paul,

I have always been a out going person, but to be able to turn the negativity into a positive to time and practice. Lets put it this way I work in retail as a sales person now and you would not beleive what some people say.

If you are ever interested in getting your PWS looked at for the hyperplagia (puffiness) I would recommend contacting Dr. Waner in NYC. He is the plastic surgeon that I had plastic surgery from. Dr. Leventen the Ask the surgeon on the front page is his partner. You could send Dr. Leventen some pictures and info about your PWS and see what he thinks about it. The link is on the front of this website.

I hope to talk to you soon and hope you have a great day.

Hank

HI Hank firstly thanks for the advice on the previous post.Im doing just what you advised.But as this will proberbly take time I wondered If you could give myself or indeed anybody else with self esteem issues some practical advice on daily life with a PWS.I myself have tried to be stronger and ignore the stares/comments.I dont if it is just me but even talking to people I am familiar with they tend to talk to my neck.Does that sound strange?What I mean is they will talking to me as a person but keep glancing at my neck whilst doing so.I need to a find method/frame of mind that works for me.Any tips would be great Hank. thanks Paul

[hankbartenbach]

Hi Paul,

It does not sound strange at all to feel like they are talking to you and can not take their eyes off your birthmark. I get it daily.

Even though it is not the right way to approach strangers. I have found myself to either turn their comments around on them or turn it into a joke.
Like they ask me and I tell them that I was in a bar fight and you should see the other guy. He is still in the hospital. Or they ask me what happened to me and I say I have no idea what happened to you? Most the time I do not say it out load but I think this one. Wow that person does not know what a birthmark is they must be a drop out or did not pay attention is science class.

Children are a different story though I always turn to education to them because they are mostly just curious and do not know better. I figure the more children I educate that people with birth defects are no different and they do not have to be affraid of us the better. If one child out of thousands I have talked to do not judge somebody else with some form of a birth defect because I talked to them and either become friends or have a relationship with then it was worth it.

I get tired of the adults, but the more people we educate about our condition the more awareness, meaning more donations for research to find a cure.

I hope this will give you some ideas to go off of.

Hope to hear from you soon.

Hank