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.

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 :)

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?