Hej, I've had Ulerythema Ophryogenes at least since I was 6 or 7, and through the years I've lost a lot af hair on my eyebrows. I'm 18 now and I've actually learned to live with it, as no one around me seems to have any problems with the way I look. Of course I hate it when it's hot and all of my face is red except for the middle part, which makes me look like some type of monkey... But I make jokes about it and it's accepted by everyone. Guys say they find it cute... I find that hard to believe. But I've never had a diagnosis, as many of us here I diagnosed it by myself, and I'm actually just happy that I know what I have, but not desperately looking for something to cure this. Am I the only one who is able just to live with it and not be worrying about what other people think? I know it takes a lot of courage and self-confidence to feel this way, and some days I can cope with it better than other days (especially high summer and mid-winter are terrible times of the year...). But it has really made my life easier, be happy about yourself! And seriously, I know what I'm talking about, if you want to I can put a picture somewhere that you know it's true what I'm saying...! I'd like to hear what you think about this, and if anyone of you thinks he/she can just live with it.

And about the eyebrows: as I'm a woman I can 'paint' them, and actually nobody notices (or at least lets me know he/she noticed it) it unless they come real close. And I always tell people honestly what I have, and as soon as they know they just accept it. Of course I get comments on my cute red cheecks, but honestly, after so many years I don't care anymore...

My face has always been ''red'' & people have commented about my red cheeks but I have KP all over my body so if it all went away & my face stayed the same I would be pretty happy!LOL Im 16 & its not always easy but it is important to be comfortable with yourself.Especially when Im exercising or hot my face gets super red & sometimes people will ask me . Are you ok?

My eyebrows are pretty ok right now...But my skin is super dry there & bumpy & iv noticed a little hair loss which scares me a little..............


~Vixie

My son is 14 and his sparse eyebrows bother him immensely. Unfortunately, being a guy , you cannot use eybrow pencil.

Hey,

I can understand being a boy makes it more difficult since you can't paint your eyebrows... And it took me a while to learn to live with it as well! But I made it and I just want people to know that it doesn't have to ruin your life! I'm really happy a website like this exists where everyone can share his/her experiences.

And about the red face when sporting... tell me about it! I just make jokes about it and tell people they'd better get used to it . Just wait till you go out on Saturdays... When you've been dancing all night and it's freakin' hot in the disco's, you seriously don't want to see the pictures taken at those moments! And for the dry skin I use a cream called "Couperose crème" from Dr. van der Hoog. I think it's only available in the Netherlands, but it's supposed to decrease the redness in your face. It doesn't work though, but the idea is okay .

Anyway, in this way I want to wish others with UO all the best luck in trying to find a way either to cure it or to live with it! And I'm sure that if we'd all particpate in research to cures for UO that there will eventually be something that really works! Maybe we can call up researchers/doctors through this website to start an investigation to UO!

You think that consult a psychologist will help me to accept it ?

Yes, I do.

the problems is that it is always on your and my mind

If you can find a good doctor/esthetician, then IPL treatment may work for you.

I've had KP since I was a little kid. I'm male and 20 now and have it really bad on my outer arms and on my waist. I thought I had KPRF for a while but I was diagnosed instead with rosacea, though I think the 2 conditions are linked to hyper vascularity.

My cheeks used to get EXTREMELY red just from mild temperature changes. But since I had the treatment, my face is almost never a concern for me.

I too have lost some hair from my eyebrows, but it's not too obvious and I don't seem to be LOSING any more hair. I'm still not sure what the cause of it is. When I look at my senior high school pictures from 3 years ago, the places where the hair is missing is exactly the same as it is now. Hormones?

Anyways, you might do well to research IPL and see if the doctors say they can do anything for you.