Another forum out there? Where are you?

[trent7276]

Hey all. Haven't heard squat from many of you affected out there by the eyebrow condition. Please drop a note here and update us. My update is this...

I've been refered in for another PDL treatment but can't afford to take off work so I won't be going. I've tried about 20 different things since my last update. Nothing really works. The Minoxidil is still going on but it isn't really any better or worse. I can live without the hair being thick, but for God's sake I want the redness gone!!! Guess I'll have to wait for a break in my job, but the first PDL and IPL didn't reduce the redness on the brows. Things are swinging back to discouragement. Anne, Harmy, Hoyhoy...any news?!?!

[hoyhoy5]

Hey Trent...Good to see some action...I check the boards daily and always hope to see a post in this section.., Years ago the dermatologist told my then 14 year old son that he had ulerythema ophryogenes, now he thinks he has rubra faceii...anyway, call it whatever you want All I know is that my son is VERY frustrated over the fact that NOTHING seems to decrease the redness.. He cant stand the comments he gets in school. At 17 he is about as frustrated as a kid can get, and he also hads a spinal curvature problem!!! He usually stays upbeat, but this week he hads been really mad that he has all these issues. Later this month he will be seen by a series of local dermatologists as he is the topic of the monthly dermatology grand rounds conference at the area medical center!!! Hopefully someone will have seen this redness before, and will advise us on the best treatment. We havent started laser to reduce the redness, because we still arent sure that it will be helpful!!! IT is SO frustratiing to be the mom, ansd watching your son so frustrated...He tried some makeup to cover up the redness, but now wont wear that either!!!...Hang in there, and lets get this site jumping with activity!

[trent7276]

Hey great to hear someone else on here. I check daily too. I can understand what your son is going through. I got the same treatment in school. Mainly I shyed away from all social situations which really hurts your development in my opinion. Makes you self-concience. But then you grow out of it later in life when you realize nobody really cares if you're red, just curious because it's not the norm and they are bored...or maybe the girls give up their Fabio dreams as they get older and they realize what's inside counts more than superficial looks when it comes to a life parter and friend, whatever, it gets better so let him know.

I really think that the PDL treatment helped longterm...it took about 6 months to really notice an improvement, but then again I need another couple treatments. It's not a one-shot deal.

Keep the site rolling. More pictures were taken of me when I was in last so dermatology students could see them.

Has your son tried the Eucerin Redness Relief lotion? It's a green tint but is lotion for man or woman and works great. Try it.

[hoyhoy5]

Its funny that you mention the eucerin redness lotion...he is upstairs right now trying it!!!! WE got free samples at the derm office(they were just in a basket when you were checking out!)..I actually posted today under rubra faceii site about the eucerin lotion....Do you use the entire system?? The cleanser, the lotion, the night cream. and the cover up??? Does the redness get covered up??or does it really fade?? Just wondering..Lets hope it helps him...he needs to find something..Also who did your laser??a dermatologist or plastic surgeon??I promise to keep in touch...Are you in the midwest?? I know you told me once before, but I cant remember..Thanks, Robin

[trent7276]

I bought the whole redness system, but only use the lotion part now. The other stuff is such a pain for a guy. The lotion will cover up and provide sun UV protection too which is what we need with redness. Works good! I don't think it will do anything to fade it longterm but no one knows for sure since this stuff just came out. I use it everyday.

oh, and a plastic surgeon did the PDL. Laser specialist for Port Wine stains and other skin defects. Still I was the first case of our kind that she has treated.

[anne]

Hi, I haven't posted here for a long time. I have ulerythema ophryogenes, atrophoderma vermiculata and keratosis pilaris atrophican faciei. Interesting to read of the cream to restore hair to the eyebrows. My boys are 13 and 10. the 10 year old (born with a congenital heart defect) is showing thinning in one eyebrow so I am interested to know of anything to prevent further hair loss. it took me 21 years to get diagnosed correctly and then the Dermatologist left the city leaving us without one. I have taken myself to the other end of the country (NZ) however to receive one pulse dyed laser treatment on cheeks and eyebrows - this helped but with the cost involved I have not had further done. This condition can be a very lonely one because as you realise not even the dermatologists no much about it - 99% of what I know comes from researching and writing letters myself. I have lived 30 years with this condition (14 to nearly 44) so if I can be of any help please fire questions at me. I have never every met anything with these conditions so it is comforting to be able to share ideas and encouragement on the net. Regards Anne

[trent7276]

Anne, thanks for writing.

I've lived with this from 12-32 now. Has your redness decreased at all on your eyebrows over the years?

The one thing I can't figure out is this: My derm says red skin is not scarred yet but still actively fighting off an attack or irritation. So if mine are still red then maybe they aren't permanently scarred yet? If not, I need something that will win this battle! Once the battle is lost and the skin is atrophy (scarred) then it should turn white or normal tone. I want the red gone!

Trent

[anne]

Hi Trent

I actually have two parts of the condition. I have like you ulerythema ophryogenes on my eyebrows. The outer third of my eyebrows disappeared in my teens and this area is still red. There is no scaring as such just redness. I haven't been under a dermatologist for years as I begrudged paying them a fortune to discover they knew less about the condition than me. I now belong to a medical scheme so am looking at going back to one to see what treatment there is for the redness. About 3 years ago I had my cheeks and eyebrows treated with a pulse dyed laser. My cheeks responded better than my eyebrows. Like you my eyebrows still seem to be 'fighting' something.

On my cheeks I have what is called atrophoderma vermiculata - here it gets a bit confusing as I think you Americans call it 'Rubra Faciei'. I have never heard that term used here. Do you have redness of the cheeks? My official diagnosis is: keratosis pilaris atrophicans faciei with the variants ulerythema ophryogenes and atrophoderma vermiculata - phew! that was a mouthful. Anyway my cheeks have stopped fighting - and hardly flare up at all - however the condition has left scarring on my cheeks - this condition is often referred to as 'honeycomb atrophy' as it leaves small pitted marks.- the PDL treatment did reduce the colour slightly but like you because of the expense involved further treatments are out of reach at the moment. Medical articles prove that PDL treatment is very effective in reducing the redness in this area.

I the past I have also used a retina - A cream which did help a bit and will get some more of this when I see the derm.

As I am a female I am fortunate that I can cover up my skin with makeup and pencil in my eyebrows. Because of this and the fact that dermatologist in NZ have not known anything about it I have not really looked for further help over the last 3 years. However my 101/2 year old son is showing signs of Ulerythema ophryogenes on one eyebrow. As he was born with a congential heart condition I am a bit anxious that this genetic disorder may be lurking in the background. I need to be prepared so I can help him. At 14 I was told I was causing my redness and put on valium - thank goodness that willl not happen to him.

Sorry to go on but there is a couple of questions I would like to put to anyone reading - medical reports cite this condition as occuring with other congenital defects and in particular ectodermal defects (ie skin, bones, teeth and central nervous system). Does anyone with these KP variants have any other genetic 'hiccups'.

Regards
Anne

[trent7276]

Ann, thanks for the reply. We are going through similar conditions, with the exception of the scarring/pitting on your face...mine is just red with no other physical effects. The red brows are my concern now because the PDL took my red cheeks down to a minimum. If you find ANYTHING that will work to stop the "fighting" of the condition on the brows thereby reducting the redness, please give me a shout. I've tried a lot of things and nothing seems to work good. Thanks.

[anne]

Hi Trent

Good to hear about the PDL treatment. How many treatments did you have and at what age did you start them? I am on the lookout for something to reduce red eyebrows also as now I am a mother with a child who seems to be developing UL. What is this differen cream I have read about in one of the posts? Have you tried it? Does it stop the loss of hair and or help the redness? I must admit I have become a bit disillusioned with dermatologists where I live but I think it is about time I began looking into it all again. I will keep you posted of any findings. Do you live in the UK or USA? If so try writing to one of the professors, doctors who are researching in this area (refer to medical journal articles which you can find on the net). These guys are at the cutting edge of treatments and may be keen to share ideas and talk to someone who has a condition they are studying. Just an idea - but my experience in NZ has shown me that I had to go looking for answers myself as a lot of doctors are not into researching things - if they don't know the answer to a problem it doesn't exist.

Regards
Anne

[trent7276]

I'm in the USA. I've never tried Differen cream. Haven't heard a lot so I'll check into it. I've tried Vita-K, Retin-A, Carmol-40, Scar ointments, Hydracortizone, and a handfull of other to no avail. Nothing makes the red go away. Eucerin Redness Relief Lotion only covers it up but doesn't bring the balance to the skin I'm looking for. Good luck with your research and let's share the info when we get it. Thanks.

[hoyhoy5]

hi Anne and Trent.....My son was seen by about 20 dermatologists last month at a grand rounds...None of them had any great words of wisom, but they did say that laser may help, but my dermotologist said he didnt think the laser was the way to go...he worried that it could cause reduction in certain areas and then maybe his skin would look blotchy..AAAHHHH!!! But one thing they did suggest was a facial cream that is used for rasacea ..it is called fonacea..it is supposed to reduce the redness..I got the prescription filled yesterday...so I will keep you all posted..Robin

[colliehc]

I have already posted a thread on the moms board today, but read this and all of what you say is just like my boy has on his face, he has rough raised bobbles under his chin the side of his cheeks under side burns are red and rough, above his top lip its also red and rough as to his forehead also rough and scally. The worst are his eyebrows which are red and his hairs are very sparse although he does have some! I have been to a dermy in the UK and he really couldn't tell me anything, we did have a meeting with around 6 dr but they all agreed it was kprf and kp nothing was mentioned about uo or av. However on reading your threads now think he has this aswell. my son is seven and I have only noticed the redness over the past 2 years, looking back on photo's his skin was rough but there was no redness. now he is very red when he perspires it looks worst. a suntan lessons this and the redness goes alltogether and he looks great till this goes then the skin looks bad again. We have used nothing as yet as do not know what to do for the best, kids at school leave him alone he says its eczema! Very common in uk so everyone accepts this. He is a vey handsom boy and I don't want this to become an issue as he has bags of confidence and would hate him becoming self concious.
You mention defects? My sons teeth have come through very marked with white flecks, he has a good diet, the dentist says his teeth are week! He has already had 1 filling in his adult teeth. though his baby teeth were strong. As a mum its hard to no what to do for the best, but I am very glad I found this web site as my son gets older I will be able to show him he's not alone I am going back to the dermy now we have an open appt to go back whenever! I am going to ask him to find out more if he can about uo.
Thanks for all your info its been a great help to me to know I'm not on my own please contact if you can offer any advice.
cheers keep your pecker up
Helen
p.s
If my dermy gives me any info i will post here also.