I live in New Zealand and I know we talk different to a lot of people! I just want to clarify some terms used by people here. Ulerythema Ophryogenes I understand as that relates to the eyebrows. I have also been told I have Keratosis Pilaris Atrophicans Faciei - which I think must be the same as what you call KPRF. This term describes the redness caused on the face (cheeks) by KP. I also have another variant call Atrophodermal Vermiculata (aka honeycomb atrophy) - this results in small 'crater like' scars on the cheeks. The redness and the eyebrows started at around 13 but the other scarring side of it happened later on I think (I am now 41 so it was awhile back!) Would be particulary interested to hear from anyone with pitting on their cheeks as it doesn't seemed to be mentioned by anyone.
Thanks

Hi Anne,

Do you also have the facial flushing or is it just the redness from the KP?

I wonder if you have ever considered either topical retin-a or a course of Accutane?

There are different opinions about the safety and effectiveness of these for KP but I have heard of a course of Accutane clearing up the bumps and redness of Ulerythema.

What has your dermatologist suggested?

Rick

Hi Rick
As a teenager through until my late twenties I had facial flushing. From about 30 onwards the flushing reduced as the keratosis pilaris on my face began to go. I still however have redness on my cheeks and eyebrows. I was finally diagnosed at age 35 - up until then I was basically told it was all emotional! Unfortunately the dermatologist who diagnosed me left our hospital soon after and has never been replaced (7 years ago!) I have travelled to see some privately but unfortunately or perhaps fortunately I now know more about this conditon than them and have found the one's I have seen to be of no real help - only really expensive. When I was diagnosed at 35 the Dr kindly did a search for me and came up with Dr Cunliffe's article you refer to on istrotien (Roaccutane) effectively treating a 40 year old lady. I tried a course of this but their was no change. Before my Dr left however he wrote out a prescription for 'Retinova' which is a topical retina-A cream. This has certainly helped the texture and feel of my skin - however it has not impacted much on the redness. I have since being researching this conditon and treatment on my own through the internet and came across the pulsed dyed laser treatment article. I had one treatment down in one of our main cities 18 months ago. This was effective in reducing the redness however at $2,000 (NZ) a go I decided to leave having another fo for awhile! - I am hoping the price will come down as at present we only have one treatment centre in all of NZ. I am encouraged with all the new develops in laser treatment for skin disorders. Unfortunately I have also started having epileptic seizures recently, along with pain around my eyes - this possibly comes ties in with the 'other ectodermal defects' that can occur with this disorder. However don't be alarmed I am the only one I have heard of with this combination so it is probably not common. Anyway I am trying to get these sorted out and finding it a battle to get someone to look at the eye pain issue. Keep in touch.