Hi Jenny

Interesting that your UO didn't start until your late 30's. Did your derm ever explain what made it kick in then? Most people I have read about with UO tend to start symptoms in their teens.

Where I have lost hair on the outer third of my eyebrows I have have fine blonde hairs showing which is strange really because I am quite dark - they are kind of like 'ghost hairs' - not sure why that has happened. Have you ever wondered why only the outer third of the eyebrows are ever effected - is that weird or what. What is different about this hair compared to the inner two thirds?

I appreciate you taking time to reply - I am 45 and am at the end of the damaging effects of UO and AV. Like you I pencil in my eyebrows each morning and just get on with life. My 12 year old son however has some hair loss on one eyebrow. My derm is not willing to make a diagnosis until he sees the redness set in again. Every so often that one eyebrow does get red and I have been putting Anunu's (NZ chemist) coconut cream on it and in the morning it is fine again. It is hard to know though if at age 12 it would be progressing much as my symptoms appeared around age 14.

At this stage it is very much 'watch and see' with my son and try and gather as much info about UO as I can just in case things do get worse. UO can often occurs with other congenital abnormalites and as my son was born with transposition of the great arteries I am a bit concerned that UO may follow.

I would love to put a bunch of chemists and dermatologists in a room and get them to discuss what could be done to stop the hair follicule being destroyed - but maybe it is a bit like men going bald - it is all a bit complicated and maybe the hair loss can never be stopped. I must admit at this stage I have far more questions about UO than answers.

It guess it is really a matter of accepting what cannot be changed and working on changing what can and having the wisdom to know the difference!

Great discussion!

I've got the one-third gone as well, replaced by blond fine hairs. The main thing I want to do is get rid of the redness. What should I try do you think, the az acid or the emu oil? Getting the red out is priority 1!!

I stopped the Monoxidil 5% finally after 4 months. Just too red, and I couldn't take the slight burning sensation of the fumes in my eyes at night when I used it.

I recently tryed Eucerin's calming cream lotion, didn't work. If don't use lotion in the morning they'll be itchy, flaky, red. If I use lotion they'll feel super sensitive to air, and red and more glossy. Help me get the red out!

Redbrow

Good to see you back Redbrow -there doesn't seem to be a lot of discussion of this forum. I wonder how many of us actually have UO???

Anyway I would be interested to see how the emu oil goes. I have been pondering this whole eyebrow thing lately. I looked up the name and if anyone is interested it comes from the latin 'Ul' meaning scarring "eyrthema' meaning redness and 'ophryo' meaning eyebrows.

So in short it is the red scarring of the eyebrows. Why just the outer third though - I suppose you could ask the same question of men - why does the hair on the top full out before the hair on the sides?

My son is now 12 and has lost hair off one eyebrow only - the derm said that his eyebrows are not 'symetrical' but reserved giving a diagnosis until the redness appears again. As I mentioned earlier I am still using Anunus (NZ chemist) coconut oil on his eyebrow when it flares up. We have had no hair loss since but I am still watching a waiting.

As for me the pulse dye laser treatment did help a bit in the eyebrow area but I think it had more impact on my cheeks. It is like the eyebrow area is more of a scar and still seems to be 'fighting' something.

Keep in touch.

PS: Have any of you got any congenital heart conditions or any other congenital issue for that matter? Just asking as I am wondering how often other genetic problems occur with UO and is it just me and my family that have other 'issues'

Hi, just in case you are wondering about the coconut oil that Anne mentioned, here are some more details.

I developed a formulation of organic extra virgin coconut oil that is solid at most temperatures found at home (unlike regular coconut oil that is often melted during the warm summer months). It can be applied after showering/bathing or throughout the day as required. It also contains a decent amount of vitamin E for its antioxidant benefits.

I called my little invention "Koru kp Oleum" (Koru = New Zealand Maori word for new growth, new life, Oleum = oil)

It seems to be helpful for quite a few people with kp, and it is great to hear that Anne has found that it helps the UO of her son's eyebrow.

I make it here at home, and can post it to you anywhere in the world!

Kind regards,

Annuu

I don't have congenital problems. My brother has heart congenital problems and has KP and red cheeks, but not the UO affecting eyebrows. I think there is some links though...

No hairloss since using the Koru kp Oleum but what about the redness? Does it keep that out? Is it applied only at night?

Hi Redbrow - my son has just turned 12 and has very mild redness every so often in the eyebrow where the hair has been lost. Yes the oil did reduce the redness but I am loathe to say it is a cure for UO as my son has not yet been diagnosed and I would not expect his UO to kick into force until maybe a year or two. I know Anunu said he used it on a patch of inflamed skin he had on his leg (I think) and it cleared it up so there are obviously some calming properties that go with it.

The redness I have from UO is from scarring - there is no more active inflammation going on so laser treatment is really the other thing that is going to get rid of those damaged blood vessels for me.

It is worth giving the coconut oil a try though - it smells absolutely lovely to use and certainly won't hurt in anyway I am sure. Anunu can post from NZ - I think his website is mentioned somewhere above.

[b]Redbrow - can I ask what congenital heart condition your brother has? B] The reason I ask is that a genetics professor in NZ is doing research on my son and myself as he believes they are linked. A few syndromes have UO and heart conditions in them i.e. Noonans and CFC.

My son had 'transposition of the great arteries' and has a bicuspid valve on his aorta.

And yes the Oleum is only applied at night - I guess thats when I notice it red and also he probably wouldn't put up with me dabbing stuff on his face in the morning before he went to school.

Private message me....

Hi Redbrow - I have sent a private message but I am not sure if this facility is working. You can email me direct if you want on:
gogorman 'at' orcon.net.nz.

Cheers
Anne

Hi I'm new here.

My children were all born at home and my 13 year old daughter has KP I just found out by the net from Photos it fits her to a T.
She has it on her face, cheeks with the red flush to them as well on her ears, neck and through her eyebrows with the red flush. Her back lightly, her arms, shoulders, legs and butt. His was born with it and at first we thought it was Baby acne and a rash from me giving birth.
I have never taken her in to the derma. But wondered what it was. Me and her birthing Mother called it chicken skin. And I had told her I had it a tiny bit on the backs of my legs when little when I got real hot. My sister I remember had it on her legs and upper arms. So is Amlactin and lacticare, flax seed oil, jojoba oil the only things that Truly work? besides the exfoliating brushes, scrubies, luffas?

I was wondering I haven't looked yet to see if there can be anything done in the line of herbs.

My son is 11 and only has it barely on his cheeks.

My 8 year old daughter has it to on her face, arms and legs. On her face, eye brows, cheeks.


Does anyone have a clue to anything?

Hi Charity

It definately sounds like KP. KP and its rarer variants often get worse in the teens so that is probably why your daughters condition has got more noticeable of late.

There is a KP variant called ulerythema ophryogenes (UO) that effects the eyebrows and can lead to hair loss on the outer third of the brow. It would be best to get a dermatologist to look at your daughter to see if this is what is happening.

UO is not normally diagnosed until after the hair loss as it is reasonably rare and often mis or undiagnosed by dermatologists.

I had the first symptoms of UO around 13 but was not diagnosed until my 30's so I did not have an opportunity to treat the KP in this area and prevent hair loss. My 12 year old son has shown some sign of KP in this area and I found a product called KP Oleum helpful in calming the redness. It is available on this site:

Koru Pharmaceuticals - Home Page

It contains extra virgin coconut oil and some other natural ingreadients. The maker of the ointment is a New Zealand pharmacist who posts on this site under Annuu. If you look under the parents forum you will find some testimonials about his products. Annuu (or Andrew) can be reached by either private message on this site or through the above website. He has worked a lot on developing products for KP (especially children) so would be a good person to talk to.

The red rash on your daughters cheeks and neck appears to be KPRF (keratosis pilaris rubra faciei). Again it would be best to get a dermatologist to diagnose this.

Unfortunately KPRF and UO aren't all that common so often derms don't always know about them. It may pay to check the internet for the above words to see if they fit your daughters symptoms.

A third KP variant that affects the face is atrophoderma vermiculata. This and UO come under the catergory of KPAF (keratosis pilaris atrophicans faciei) as they actually atrophy or scar the face. AV is very very rare and affects the top part of the cheeks making them very red and giving them a rough pitted appearance.

It may well be that your daughter just has KP bumps on her face - a dermatologist should be able to tell you exactly what is going on. However if you have a good understanding of what these conditions are it will help to gain an accurate diagnosis and ensure the appropriate treatment is given.

Please let me know if I can be of any further help.

Regards
Anne

Hello Annuu,

private message me on the price of this stuff for the UO.

Anne,

It does not appear that my daughter has any hair lose what so ever.
It appears that it is just the bumps, they will get little white tips and you can scratch the tops off and take the Keratin out and then it is plug free, she does not appear to have pits or scars or anything like that either.
I have read where some have it burn or sting, she has none of this either, it does not bother her it just is rough and bumps and red.
When little and even now, everyone used to comment about how healthy they were and how they had rosy cheeks cold or warm weather. If she gets real hot or cries oh dear it looks terribly red.
The children are basically Vegan eaters. They eat no animal products nor dairy, and little soy.

We live in New Mexico but we are moving to Hawaii in 3 1/2 months.
I read on other sites where the KP effects their skin if you live or are in dry weather. I think moving there will be wonderful, but I thought how the humidity will be good for her skin too when I found out we were finally getting to move. we have desired to move there for 3 years, and now Fathers timing is working it all out. Lots of natural things to eat, and more healthful. Mexico is not a place where there is healthy living. We moved here from Oregon, what a change. Healthy eating there for sure. But my husband has lived in Hawaii twice and so now he desires to return, I am more then happy to go, beings the children and I have never been there.

hey all, ive been on these forums for a while but only realised (thanks anne!) that i not only have kprf but uo also. i always just figured the sparse eyebrows where a side effect from the kprf..anyway, ive been using freederm cream which has slightly reduced the redness on my cheeks and above my eyebrows..but nothing to write home about! ive also just bought some minoxidel on ebay so ill let you know how that goes

its made me very self conscious and i suffered terribley in my school days. but since ive reached my twenties ive found ways to deal with it better...such as growing my hair to cover my eyebrows! but i really want to get rid of it for good. i suppose like you redbrow, priority one is the redness on both my eyebrows and cheeks. then see if i can get some hair back

thanks guys, its good to know im not alone in this x

Hi again and welcome to the UO forum

As you can see there are not a lot of people out there with UO so you are a special breed!

From being on this forum a while and from research of my own I have heard of the following options for treatment (there are also various creams but I have never heard of any of them having real results):

In your case where the UO has pretty much run it's course
a) Hair transplantation - this is all very new with a member of the forum just having it done last week - refer this thread:

Eyebrow Transplantion???

I have never heard of it happening before for UO so you may want to follow this thread or PM 'knp833' to find out how he is getting on

b) the second option is PDL treatment to get rid of the redness. I have had this done and it has helped but I must admit it helped the cheek area more. For me the redness on the eyebrows is more a scarring redness. However PDL should help reduce this but it may take a few treatments

Where UO is still in its inflammatory stages Isotretinion (Roaccutane) is reported to stop it progressing:

Refer Professor Cunliffes article on this link:

Keratosis Pilaris (KP)

(I tried this when finally diagnosed in my thirties but it didn't help. I believe this is because the inflammatory stage had finished and only redness from scarring was left)

There is also articles about PDL on the above site.

In case you hadn't been told by your derm there are basically five types of keritinization disorders:

1) KP - this is just bumps on your arms legs etc - can be red or just white
2) KPRF - this is KP bumps on your face - usually located to the outer lower part
3) KPAF (keratosis pilaris atrophicans faciei) - these condtions atrophy or scar the face. KPAF includes:
a) Ulerythema Ophryogenes - effects outer third of the eyebrows
b) Atrophoderma Vermiculata - causes the top part of the cheeks to become red and pitted (sometimes referred to as giving a honeycomb appearance on the cheeks)
4) Keratosis follicularis spinulosa decalvans - usually effects only males - causes hair loss on the scalp

These conditions get rarer as they go down the list. They can occur on their own but usually appear with normal KP and get worse in the teens.

Like you I notice improvement in my twenties (late).

Feel free to ask questions and post anything that has helped - we need all the input we can get on this forum.

Regards
Anne

PS: here is a link to the NZ dermatological site - however their picture of KPAF looks like KPRF so I'm thinking it is a typo. PPS: I can criticise the site because I am a New Zealander

Keratosis Pilaris. DermNet NZ