a little about my life with an hemangioma

I'm 33 years old and developed an hemagioma just after birth.* It grew to be huge in my right cheek and was removed when I was 2 1/2.* I have had several reconstructive surgeries but still don't look completely normal.* I doubt I ever will.* For a long time, that bothered me.* I was the kid in the back of the class with the hair covering her face.* I was the one who never ever offered comments in class and tried really hard to be invisible. Now I demand the attention of about a hundred students a day.* I am a high school teacher.* I still get self-conscious at times.* But I get over it.* Growing up, I had a really strong support system and a home where I felt completely safe.* I think that support and safety was vital in my development.* I can't imagine going through that without the unconditional love of family and a few close friends.* My heart goes out to anyone who feels completely isolated with something like this.* What we go through might not ever be completely understood by the nonafflicted, but that doesn't mean we can't find some comfort and strength in their love and concern for us.* --Kristen

[hankbartenbach]

Hi Kristen,

First of all welcome to the group.

I am 23 with facial PWS. I know exactly what you are talking about. The pointing, staring, and comments can be pretty cruel sometimes. Having a supportive family is very important for people in awere shoes. Parents can share awere pain, but have no clue what it feels like to be looked at like we do day in day out. Thank goodness for technology these days that make a deference in peoples lives.

I hope to hear more about you in the group. I think you can inspire several mothers and other adults on this group to give hope that there is something at the end of the tunnel.

Talk to you soon.

Hank

hi there!

I am 22 yrs old with hemangioma on my right cheek. Like you, I am also a teacher.. but i teach the lower grades.. they are more frank than most adults. Eventhough i put on concealer, as the day goes by, the mark become more obvious. My students never made fun of it.. instead they ask questions.. and i am more than happy to explain to them.. and i believe as a teacher we can do alot to the future generation.. in term of character building.. and what a better way to teach abt self-confidence and beauty in the eye of the beholder other than by being a role model... but i have a confession.. sometime i made use of my mark as a way to get them to listen to me.. and it usually work! hahaha