So impressed with this community
Hi, my name is Allison, Iím 32 and Iím new here. I have a small PWS on my right forearm. It is flat and red, and causes no pain nor any other complications. My mother also has a PWS, but much larger, covering her entire left arm and progressing onto her chest, neck, and back. I have never given either of them much thought until recently, when she began to get bleps. She started researching PWS for the first time, and she found this site.
I am absolutely amazed by what I have read here so far. I had no idea the physical problems they could cause Ė pain, eye and dental issues, skin thickening, bleps, etc. I had no idea people suffered physically from PWS. I think I assumed they were all just like mine Ė basically just a discoloration and any pain was emotional. I was very very wrong.
I am completely humbled by the experiences of everyone else here, and how much strength you all have shown. This is a difficult condition to deal with, both physically and emotionally, and Iím so completely impressed with how much strength, grace, and kindness you have all shown each other on these boards and in your daily lives. From parents of birthmarked infants to adults who had no resources nor support for many years, you should ALL be proud of yourselves for facing this challenge with heads held high. It is a pain that most people will never understand, and at times we all feel isolated, alone, and different. But that doesnít mean you have to choose to live your life that way. You canít control your skin, but you can control who you choose to be.
To all the parents out there Ė it will be OK. It really will. There are a lot of happy, successful adults on this site who are proof of that.
How wonderful to have this amazing resource to reach out to others and gain support and knowledge. We will both be attending the NYC conference in November and I look forward to meeting some of you amazing people!