help me..

Hi there..I'm afraid I'm a big newbie! I'm 17 and live in the UK (not sure where this site is based) and I have a pws from hip to toe on my leg..I'd really appreciate any support anyone can lend me as I am a self-confessed all-year round trouser wearer. My body confidence has been zero since entering that age group where appearence (apparently) is everything! I have only 2 friends who actually know about my birthmark, all others are oblivious (and too shallow to be trusted :-\) Feels so strange to talk so openly for the first time about something I've hidden for most of my life...would appreciate any help offered..thankyou xx

[hankbartenbach]

Hi Holly,

I am 23 with facial PWS.

The VBF has a Chapter in Europe. I live in USA but am a member of this group as well as here. A lot of the people on that group have children with Hemangiomas, but there are several people from UK. http://vbfeurope.org/

There are more people with PWS on this group.

My opinion on your post.

I am a bottler with my emotions when I am face to face with someone. When I come to these groups I can open up because I do not feel judged because everybody with a VB knows what it feels like and do not like it. Parents, relatives, and friends do not like people stareing at use either some even get affended about it.
I have learned over the years to ignore people staring, laughing, and the comments towards my PWS. It is negative energy that we do not need in awere lives and if people can not except us for who we are we do not need them around us.
When you get out of High School it will get better, trust me.
Your PWS is in an area where you can cover it up, but I can not. I have tried make up, but for a guy that does not always go well with the public either.

If you have any questions please ask we are here for you.

I will talk to you soon.

Hank

Hi...thankyou for replying. I'm so excited that I've actually found this place; its a total relief! I admire your confidence and strength and can only hope that one day I can reach that too. In a way, by having my PWS on my leg, its too easy to hide and just ignore but I can't wait till I'm confident enough to pity those who feel it necessary to stare/point etc.
Thanks for the link, will check that out in a mo..just wondered also if you knew of anywhere I could ask about medical queries concerning my laser treatment?
Many Thanks
Holly

[hankbartenbach]

Hi Holly,

Ask right in this section or on this topic about laser treatment.
There are a lot of people on this group that have delt laser treatment and insurance coverage. I have been doing laser treatment for 18 years off and on. If you would like to read about some of my experences with laser treatment you can go to my website www.hankspws.com If you have any questions about what I have put on there let me know. Otherwise any qustions you might have about lasers ask away.

Hank

Holly,

You may also want to check out birthmarks.com They have a email forum, and their are a couple of UK people that read the emails. Also plenty of adults in the same situation.

Glad you are here

Cheers
Catherine (mum to Claire facial pws)

Hi
Thankyou both for the sites, I've visited them both now. I'd never heard of Dr. Waner until I visited your site Hank and it looks like surgery was a success for you. My PWS is currently flat and covers a very large area. It is too early to tell whether my laser treatment is working but if it does and my birthmark fades, does this lower the chance of it going lumpy later in life?
Many thanks
Holly

[hankbartenbach]

Hi Holly,

It is really hard to say because everybodies PWS is different. Have you ever looked into KT Syndrome. If you have that it defently would make a difference. Laser treatment could defently prolong the growth. If you want to post a picture or email me one I could tell you my opinion.

Also, sun exposure, getting sun burn, or a tan on the PWS is also a very bad idea because it makes the laser treatment less effective on the PWS.

Talk to you soon.

Hank

Hi Holly,

The birthmark you have sounds very similar to the birthmark my daughter (18 months old) has. Hers also stretches from her hip to her toes, on the right leg. I am definitely not an expert on the condition (yet), like some of the other people here. I wanted to let you know though that you are not alone in the world!

My daughter has had two laser treatments and we were told that these would also help prevent development of lumps and bumps, just like you are suggesting. However, we have had no visible effect yet (no breaking up of the stain). How it works exactly I will hope to find out when we see our dermatologist again, in about two weeks.

You may also want to sign up for the website www.birthmarks.com. You can find many strengthening life stories there. I know there is one too from a girl your age who has a large PWS on her leg, just like you. If you have trouble finding it, let me know.

Liesbeth

[hankbartenbach]

Hi Liesbeth,

Hang in there with the laser treatments. It will take time before you start seeing changes, but remember you see her PWS everyday so you will not be able to see big changes. Ask your relatives that do not see your daughter very often if they can tell any changes they are the ones that will be able to tell.

Are they useing the V-Beam on your daughter? I love this laser compaired to the others I have used.

Hank

Hi Hank,

Thanks for your message. I don't know exactly what type of laser was used. All I know that it was "pulsed dye laser". Next time we go in I am going to take notes of everything. Reading through some of the posts here, I must confess that I really have not paid much attention to the details of our daughter's treatment and just left a lot up to the dermatologist! We are just now finding out how important self-education is . Our next step is to determine whether our daughter has KTS, how deep her "malformation" is, etc. We just had x-rays and an ultrasound done, and will hear more about these next week when we see the dermatologist again. Hopefully we'll get some clearity then.

Liesbeth