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-   -   hair loss and pws (http://birthmark.org/board/showthread.php?t=81)

club_led 01-11-2003 02:40 PM

hair loss and pws
 
I'm very curious if anyone else has encountered this dilemma? I have a huge pws which is on my right ear, eardrum, neck, face and over the top of my head. It took forever but when I was finally able to grow a beard and grow my hair a bit longer I felt pretty much regular. Now that I've turned 50 the hair (only on the birthmark is disappearing). I'm totally devasted and am at the point that I don't want to go out the front door anymore. When all the hair is gone, I'll look like I have a map of Asia going all over my head. With hair on the other side.

Has anyone else encountered this or come up with a way to deal with it sanely on a day to day basis?

Thanks a bunch. Chris

hankbartenbach 01-12-2003 08:05 PM

Re:hair loss and pws
 
Hey Chris

This is Hank.

I think we have the same problem. Because I to have a birthmark on the crown of my head and it is a vascalur malformation (hemangeoma). I am 20 years old and my hair is so thin on the right side of my head because of the malformation. I can not grow a complete mostach because I have a malformation on my right lip and hardly any hair grows out of it.
I do not have any marks below my lip but I have been trying to grow out a beard and it is takeing forever. How long did it take you. I have been trying for a couple of years now.
I have a birthmark in my right ear that has given me hearing loss. and I have birthmark on my top jum.

Well you sound like you went thru what I am going thru right now.
It also as been effecting my relationships with the girls.
Do you have any advice about that because I know it effected yours as well in past years.

Please email back and if you have any question please ask.

talk to you soon.

Hank B

club_led 01-12-2003 08:59 PM

Re:hair loss and pws
 
Hi Hank. Sounds indeed as if we have a lot of the same characteristics. As far as the beard goes: my facial hair has always grown at the same rate although the right side has always been just a tad thinner. My birthmark covers my entire right neck from my right shoulder and all the way up the right side of my face but then turns back just above the jaw goes over my ear and on and up over the top of the back and right side of my head. The part that protrudes onto the face is covered by my beard. That part seems to be hanging in there. I've had my beard since being your age. Hang in there, I didn't have a full beard until I was in my mid 20's. I think the worst part for me now is dealing with this all over again. I've really had some mixed feelings since this has all popped up again. I thought it was enough that I had to suffer with all of this through childhood. Now that it's disappearing at an alarming rate on ONE side of my head is another can of worms! I'm quite peeved at the guy upstairs about this, if you know what I mean?!

As far as the girls go. My wife thinks I'm totally nuts. She says screw everybody else. She's my angel, thank god! I've found over the years that living with this has made me stronger in other areas. I've had to rely on personality and my quick wit to get me by. I did find that once people get to know me I'm always popular. But it's a real chore, as I know you must, to be strong and keep up appearances that you're not self conscious etc. It took me years to get out of being such an introvert but I feel it all coming back again now. Hence me looking on the Internet for stuff like this. In my case I think I'm going to have to resort to getting some kind of wig or something. I just don't know how else to deal with it. My wife and family say: what's the bid deal? A lot of men go bald. My answer to that is: not on just one side of their head! And to have a map of Asia on it doesn't help any either! I also have had hearing loss in the right ear since birth, and it has gotten much much worse. I'm almost totally deaf in that ear now.

Unfortunately I don't have any answers for you. From what I've learned about the hair thing is that there's nothing you can do. Hopefully you'll luck out as I did in the beard department. I feel for you bro'! Keep in touch. If you'd like my home e-mail address just holler.

All my best. Chris

Pete Harris 06-30-2013 03:06 AM

Hey Chris, I think I'm having the same problem you had/have. Can you give me an update as to what happened?

Thanks

Pete


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