marcinko , I hear you out buddy . The past 2 month have been disastrous for me all because of this redness burning on my cheeks . My whole life just changed in few days , and I think I'm never gonna be the same . Now that I've figured out I've got this horrible KPRF disease which has no cure. but ever since the red cheeks came back , my self-esteem has been running low ...and my whole life just changed upside down. I think I became obsesed with my cheeks! It's really sad .... I just dont care anymore if im gonna have a normal skin.

Just wanted to update by saying that my appointment with the Dermatology department at Mayo Clinic is this Tuesday, May 29th. I'm coming well prepared and am excited and anxious for the outcome. I will give an update of my experience and maybe just maybe some answers.

I'm going into this appointment hoping to be a voice for all KPRF sufferers. If you guys have any questions that you would like me to ask while I'm there, please post them here. I will be there all week.

Keeping hope alive,

Prager34

Just a big "good luck" and thanks for speaking for everyone!

Wishing you all the best for your visit and thanks for involving other KPRFers in your search for some answers.

I believe as people keep on asking, seeking and knocking (figuratively) at the doors placed in front of them anwers will come.

well I've got a question - are people who suffer from KPRF more prone to develop rosacea?shall we use any antiredness creams (for vascular problems/rosacea) or just AHA/urea creams to exfoliate?Is there any relationship between stress/anxiety/depression and KP/KPRF?

Best wishes and good luck!

Prager - I guess my one big question is

"has anyone done an histology report on the skin of a KPRF sufferer to find out the exact physical changes going on in the skin"

i.e. how much of the redness is due to inflamed hair follicules and how much of the redness is due to damaged blood vessells

thanks

Great questions! I'm taking them with me today. Keep the questions coming, I'll be there all week.

Prager34: Is there an equation to figuring out what is causing your KP? On this forum (see thread: worst of KP ever cured naturally) Baronster finally figured out with the help of a naturopathic doctor that she had a candida problem which was causing Leaky Gut Syndrom, and a number of food sensitivities. How can any of us know (outside of expensive testing) if we have any number of these problems or a simple vitamin deficiency?

Ask them about SR101 - a topical drug on trial at the Mayo Clinic (Phase 2) at the moment for Rosacea. It's supposed to clear up facial redness. They might let you in on the trial.
B

I agree, ask about sr101 and briefly about biological response modifiers(link under thread "exciting news"). These are future treatments that might help people with kprf. There has to be some treatments outside of roasting our face with pdls. Tell them we care about the redness, not the stupid little bumps that are barely present. Good luck Prager, youre my pal and weve been here a while mate.

Well I didn't have a chance to ask all of the follow-up questions that I wanted to. My follow-up appointment at the end of the week was very short because they wanted to see me back again to run some more tests.

The dermatolgists did however diagnose me with keratosis pilaris atrophicans faceii on my cheeks. It seems as if kpaf and kprf are the same things from reading past posts.

So now at least I've been correctly diagnosed. She didn't have any suggestions for the skin as they were more concerned about all of the flushing that has been occurring.

I have a lot of flushing that occurs from anxiety and stress related activities. I'm not sure if that is consistent with everybody else that has kprf. I may have kprf and another condition that is causing more flushing then normal. I'm not sure.

I go back to Mayo Clinic towards the end of the summer.

HI Prager - KPAF and KPRF are not the same. When I first started on this board I thought it was just the American word for KPAF but then I soon realised that when people talked about KPRF they were referring to the red KP bumps on the face (usually to the sides of the cheeks)

KPAF includes:
Atrophoderma Vermiculata (redness on the top part of the cheeks which causes eventual small pits in your skin)
Ulerythema Ophryogenes - which cause scarring of the eyebrows
(both these conditons fall under the heading of KPAF as they 'Atrophy' of damage the skin permanently in some way)


KPRF is a different condition altogether from the above.

I have known some people to call Ulerythema Ophryogenes 'Keratosis Pilaris Atrophicans faciei'
i.e. I have UO and AV but my official diagnosis was:
Keratosis Pilaris Atrophicans Faciei with the variant Atrophoderma vermiculata

Did they mention the words 'Atorphoderma vermiculata' to you?


I had KPRF also at your age - they can all occur together. Did they think you had KPRF on the side of your cheeks also. My whole cheek used to be really red at your age but the top part used to get inflamed the most and stay that way for ages. Now at age 45 the KPRF has faded away and the scarring from KPAF remains. Theere is a photo of me on the last post on the UO forum if you want to see what I mean.

Ask them to point to what area they are calling what - from what I have seen of you I thought you definately had KPRF on the sides and lower portion of your cheek - but hey the Mayo clinic are the experts

Because these conditions are rare and different writers of articles from different countries use different terms it can be confusing.

I not questioning what they have said - you just need to know what they mean by the term KPAF and perhaps check if you have 'atrophoderma vermiculata'.


Hope I haven't confused things further - let me know if I have

Prager please ask about SR 101 when you return to the clinic. I think the Mayo Clinic is where the test is taking place.