Arm/hand PWS questions?? - Vascular Birthmarks Foundation Forum
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Old 01-16-2013, 07:51 PM
prezy21 prezy21 is offline
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Default Arm/hand PWS questions??

So my almost 3 year old has a PWS on his entire right arm and hand. I feel like he's the only one. Everything is about facial PWS and I just wanted to hear from people if any that have it on the arm/hand. How's it going? We did laser treatments for about a year but them had to stop because our dr over lasered the area and she didn't think the skin would repigment but thankfully it did after about 8-9 months. We see a dr in Chicago. We haven't seen the dr since Sept 2011. It took me a long time to get over my frustration with her. I also wondered if there are other options out there to help the hand with the PWS? I was always told from the beginning that the pulsed dye laser wouldn't help but maybe something else can. Just looking for some input from others like my son. I'm so nervous for him to enter preschool this August. I just want to take it away from him.
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Old 01-16-2013, 08:10 PM
katiek katiek is offline
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Hi, I'm 18 years old, I have PWS on my left arm, palm of hand, shoulder, half of chest and half of back. I started laser treatment aged 6 weeks and finished aged 10 years. It didn't make a dramatic difference to the colour and it has got darker recently, but I haven't had anymore treatment as its quite painful and will never fully get rid of it. I posted on here today titled 'embrace your birthmark' it's a brief story about my birthmark and how I deal with it. Don't be scared about him going to school, I have had a few hurtful things said to me but on the whole people just want to know more about it. Just remember your son is special - there is no one else in the world like him, every birthmark is different. It was known as 'Katie's pretty pattern' for the first few years of my life - I think that has probably helped me deal with it. Birthmarks are beautiful, they make us who we are.
I hope this helps! If you have anymore questions please feel free to contact me
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Old 01-17-2013, 04:29 PM
barbharman barbharman is offline
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Katie, I have an 11 year old daughter with the exact same PWS as you but on her right side. I would love to be able to have her talk to someone just like her. Can you email me at barbharman@yahoo.com?
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Old 09-04-2013, 03:13 AM
olchan olchan is offline
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Quote:
Originally Posted by prezy21 View Post
So my almost 3 year old has a PWS on his entire right arm and hand. I feel like he's the only one. Everything is about facial PWS and I just wanted to hear from people if any that have it on the arm/hand. How's it going? We did laser treatments for about a year but them had to stop because our dr over lasered the area and she didn't think the skin would repigment but thankfully it did after about 8-9 months. We see a dr in Chicago. We haven't seen the dr since Sept 2011. It took me a long time to get over my frustration with her. I also wondered if there are other options out there to help the hand with the PWS? I was always told from the beginning that the pulsed dye laser wouldn't help but maybe something else can. Just looking for some input from others like my son. I'm so nervous for him to enter preschool this August. I just want to take it away from him.
Hi prezy 21, my son, 2 years old has the exact same birthmark on his left arm and hand. We are also in Chicago and he was seeing a derm at Laurie hospital. Can I please ask you how the laser treatments went and what degree of fading was achieved?

Thanks,
Mary
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  #5  
Old 02-21-2014, 07:51 PM
Tater Tater is offline
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Default Left hand and arm PWS

I also have the PWS on left arm and hand. This was extremely painful during puberty as the birthmark was growing faster then the rest of me. I would have to go to the girls room to cool off the heated patch. My PWS is my mood detector, it lets other know what mood I am in depending on the colour. If I am upset or mad it is dark red, if I am passive it is pail pink. One of the things as an adult that I do not like it that I currently have anxiety and the left side "feels" everything more intensely then the rest of me, which makes me think I am having a heart issue. With the birthmark being on a arm it will throw off your balance as area to which the PWS covers is larger from puberty, so simple things like biking or body support can leave your shoulders sore. Exposure to sun leaves it irritated and redder until the burn heals, please do not expose to long periods of sunlight. I have worked with kids for over a decade and have had many a questions concerning my spotted arm and hand and I have smiles with them and they touch it and move to watch it disappear. I was bullied in school because of it, but I survived. I actually get mad at people who cover their birthmarks as I feel that everyone needs to see it to accept it. It belongs to me, it was free and it makes then unique from others.
As a kid, I would outline the patched in boredom, hours of entertainment. My mother was good, she explained to me what it was and it was good because I could always tell my right from my left with the spots. It was a free tattoo where others had to pay for theirs, and that it made me special. I am glad she did nothing to cover it up. My good friends do not see it, strangers do and I forget when they stare why they are staring and just smile at them. I ware tank tops, I do not cover it.
I call my birthmark my mood detector, it on a normal day feels like there is a glove over it, so I can't check water temp with it. If I am out of sorts it can be painful until to reason goes away. Pictures, I have a tendency to put that arm behind my back so the flash does not zone into it. Other then that it is just a birthmark.. a free tattoo..
I am open to questions, I have lived with this for 40+ years
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