Rareness of rubra faceii

Sad But True · #1 12-03-2005, 05:40 PM

Hi everyone. We KP sufferers all hear the common statistic that almost half of the population has KP, but does anyone know or care to guess what percentage have rubra faceii? I'd question potential results, because rubra faceii is often misdiagnosed (they told me I had rosacea).

I did a Google for rubra faceii and got only 643 results, while keratosis pilaris got 180,000 results. A Google image search only turned up two pictures for rubra faceii. This subforum itself has vastly fewer threads than the General Discussion subforum. In my personal life I don't believe I've seen more than one or two people with this condition (although a fair amount have rosy cheeks for whatever reason). All of this makes me think that those of us who have rubra faceii are quite rare and, obviously, unlucky.

Prager34 · #2 12-08-2005, 02:31 AM

Unfortunately you're right and that is the truth. This is a very rare condition when compared with the general KP which I think all KPRF seem to have as well. I think the few of us that are out there need to get together, put our heads together and see if we can figure this thing out rather than sitting on the bench waiting for something to happen.

Email Me

nahpeh · #3 12-09-2005, 09:39 AM

prager34, you're right we need to stick our heads together and try to solve this problem. There is not much research to this condition, i think there is more research on kp then on kprf.

k.a · #4 12-10-2005, 02:26 PM

Is Rubra Faceii only when you have really red cheeks and bumps all over your face, or can u have RF if you only have really (i mean REALLY) red face and KP on the body?

JustinDean · #5 12-11-2005, 08:06 PM

I am new to this forum and a definate patient with diagnosed KPRF! It's taken me along time to figure out what I have. I actually sell Dermatology products to Derms and they have never brought it up to me so I asked a good friend of mine who is a Derm. why he hasn't said anything. The only answer he said was because there really isn't anything to treat it with. He did say that I should try a new moisturizing cream called Mimyx and also try Elidel to reduce the redness. I feel all your pain. Does anyone elses get worse with exercise or alcohol?

JNallyKP · #6 12-11-2005, 10:53 PM

OMG THIS IS RUINING MY LIFE!!!!....i cant even joke around with someone without my cheeks turning red...or when someone says something to me joking around..i always get embarrassed and when i get out in the ocld weather or out of the sun or when im in front of people. I turn bright red. and everbodys like OMG look at your cheeks..Are you OK? Are you having a reaction?

deathtorubra · #7 02-03-2006, 02:29 AM

JNally i know what you are saying, pretty much i have learned in many situations just to not give a **** and brush off the comments on the surface. i hate when people bring it up but when i was in high school it was always brought up by girls who found it cute as it was not that bad on many occassions but after the comments by girls or anyone it would eat away at me and cause full flushing of my cheeks.

buck · #8 02-03-2006, 01:51 PM

Jnally and Death, I have been in the same situations. Its a bastard I know.

Im starting to get it under control abit now. Lately my routine has been Cod liver oil in the morning, fresh carrot juice after tea and vitamin E cream at night.

I also drink Green tea during the day. Im going to wait a couple months before I can see any results but I do feel less stressed about my cheeks now.

Anonymous · #9 02-07-2006, 09:02 PM

Quote:

Originally Posted by JNallyKP

OMG THIS IS RUINING MY LIFE!!!!....i cant even joke around with someone without my cheeks turning red...or when someone says something to me joking around..i always get embarrassed and when i get out in the ocld weather or out of the sun or when im in front of people. I turn bright red. and everbodys like OMG look at your cheeks..Are you OK? Are you having a reaction?

OMG I hate that.. I have it both on my arms and i have the red face... The one time i was ever "made fun of" because of it and the guy was a jerk so I shoved him on the ground and mashed his pretty little face in but he tried to fight back but I still won.. lol

That was way back in freshman year of HS and no one ever bothered me about it again

Min · #10 02-27-2006, 07:26 PM

I’ve had KP my entire life and tried almost everything on the market, and unfortunately no luck. The worst part of this horrendous condition is that I have Faceii Rubra on my face, very badly. I slowly developed this as a child and became worse as I got older. I’m twenty years old and my cheeks are still rosy red. I’ve been wearing make-up since the fifth grade, and have mastered the art of make-up concealing it very well. Strangely I receive many compliments on my make-up all the time, saying I have beautiful skin. Though, only I know the sadness I feel at night when I remove my make-up, looking in the mirror at a face that will never be unveiled freely in public. Every summer I buy water-proof make-up, preferably Derma-Blend or Estee Lauder maximum cover. I noticed that using a nice shimmer powder with some subtle glitz can illuminate your skin, creating the illusion of a luminous, glow. I use blush, surprisingly, highlighting the cheekbone area; you can still put some color on your cheek area. I think that since we are sufferers of horrible skin, the best thing I found is to play up other features on your face, like your eyes or lips. Everything in moderation, you don’t want to go overboard, but appreciate what you have. I haven’t been blessed with the most beautiful skin, but I’ve realized that I have to make the best of it. I have had numerous laser procedures called Facial Rejuvenation. I recommend this treatment for those that have tried topical creams that haven’t worked, like in my case. You can get this done in the dermatologist office, and it costs $150.00 per treatment per month. My face still is blushing red, but a lot lighter. When I first had my consultation it was said that three treatments would be enough, wrong. I’ve had probably about ten, honestly I’ve lost count. It an expensive procedure to keep up, but I feel like it was all worth it even if the redness isn’t as bright. The procedure isn’t too painful, but tolerable. You only feel like a blast of cool air and slight stinging pinches, almost like a tiny bees’ sting. I’m pleased with the results, but it’s a slow process to get more dramatic results. I’m going to continue until it’s completely gone, but who knows how long and how much this will cost. I guess this is for those desperately wanting to get rid of the redness. I will say that the more intensity you choose with the laser beam, the better the results. Your face will be purple or a deeper shade of red for about week or so. I didn’t mind any of the pain whatsoever, because I don’t want to have to wear so much make-up the rest of my life. Overall, that is best thing I’ve tried. This treatment can banish redness, Acne, and help collagen build up in your face. My upper arms, I guess will forever have KP. I just exfoliate and use Bath and Body Works, True Blue Spa/ Lay It on Thick /shea butter body cream. It makes my skin softer, but the bumps are still apparent. I even once thought that if maybe I got my hair on my upper arm removed the bumps would disappear since this so-called keratin protein clogs around my hair follicle. I thought that if the hair is no longer present nothing could form the tiny bump, but my dermatologist said that it wouldn’t work, that I have way too many hair follicles visible and non-visible and it would still be there. So, I just hope that someday that there will be something out there to reduce or cure this skin disorder. I’ll just be wearing my three quarter length tees in the summer. I’m now too afraid to sun bathe with the numerous cases of skin cancer, which I used to be a huge sun worshipper. I decided that this summer I will wear my sun screen, because I don’t want Botox injections when I’m in my early 30’s. If there is anyone out there has a great home remedy or knows of a great treatment, post it. I guess the only thing we can do is just be thankful for what we have, because it could be worse. There are many individuals in the world that have been burned and have permanent scars on their face and would love to have a few bumps or rosy, red cheeks than deformities. That’s what I think of when I want to cry when I feel not beautiful enough as the girl sitting beside me with gorgeous skin. I guess we must not lose hope, but strive forward to feel comfortable in our own skin.

TC00 · #11 03-01-2006, 04:30 AM

Quote:

Originally Posted by Min

I’ve had KP my entire life and tried almost everything on the market, and unfortunately no luck. The worst part of this horrendous condition is that I have Faceii Rubra on my face, very badly. I slowly developed this as a child and became worse as I got older. I’m twenty years old and my cheeks are still rosy red. I’ve been wearing make-up since the fifth grade, and have mastered the art of make-up concealing it very well. Strangely I receive many compliments on my make-up all the time, saying I have beautiful skin. Though, only I know the sadness I feel at night when I remove my make-up, looking in the mirror at a face that will never be unveiled freely in public. Every summer I buy water-proof make-up, preferably Derma-Blend or Estee Lauder maximum cover. I noticed that using a nice shimmer powder with some subtle glitz can illuminate your skin, creating the illusion of a luminous, glow. I use blush, surprisingly, highlighting the cheekbone area; you can still put some color on your cheek area. I think that since we are sufferers of horrible skin, the best thing I found is to play up other features on your face, like your eyes or lips. Everything in moderation, you don’t want to go overboard, but appreciate what you have. I haven’t been blessed with the most beautiful skin, but I’ve realized that I have to make the best of it. I have had numerous laser procedures called Facial Rejuvenation. I recommend this treatment for those that have tried topical creams that haven’t worked, like in my case. You can get this done in the dermatologist office, and it costs $150.00 per treatment per month. My face still is blushing red, but a lot lighter. When I first had my consultation it was said that three treatments would be enough, wrong. I’ve had probably about ten, honestly I’ve lost count. It an expensive procedure to keep up, but I feel like it was all worth it even if the redness isn’t as bright. The procedure isn’t too painful, but tolerable. You only feel like a blast of cool air and slight stinging pinches, almost like a tiny bees’ sting. I’m pleased with the results, but it’s a slow process to get more dramatic results. I’m going to continue until it’s completely gone, but who knows how long and how much this will cost. I guess this is for those desperately wanting to get rid of the redness. I will say that the more intensity you choose with the laser beam, the better the results. Your face will be purple or a deeper shade of red for about week or so. I didn’t mind any of the pain whatsoever, because I don’t want to have to wear so much make-up the rest of my life. Overall, that is best thing I’ve tried. This treatment can banish redness, Acne, and help collagen build up in your face. My upper arms, I guess will forever have KP. I just exfoliate and use Bath and Body Works, True Blue Spa/ Lay It on Thick /shea butter body cream. It makes my skin softer, but the bumps are still apparent. I even once thought that if maybe I got my hair on my upper arm removed the bumps would disappear since this so-called keratin protein clogs around my hair follicle. I thought that if the hair is no longer present nothing could form the tiny bump, but my dermatologist said that it wouldn’t work, that I have way too many hair follicles visible and non-visible and it would still be there. So, I just hope that someday that there will be something out there to reduce or cure this skin disorder. I’ll just be wearing my three quarter length tees in the summer. I’m now too afraid to sun bathe with the numerous cases of skin cancer, which I used to be a huge sun worshipper. I decided that this summer I will wear my sun screen, because I don’t want Botox injections when I’m in my early 30’s. If there is anyone out there has a great home remedy or knows of a great treatment, post it. I guess the only thing we can do is just be thankful for what we have, because it could be worse. There are many individuals in the world that have been burned and have permanent scars on their face and would love to have a few bumps or rosy, red cheeks than deformities. That’s what I think of when I want to cry when I feel not beautiful enough as the girl sitting beside me with gorgeous skin. I guess we must not lose hope, but strive forward to feel comfortable in our own skin.

good post

SarahsMom · #12 04-21-2006, 08:38 PM

My 3-year-old daughter has KPRF really badly (well, KP pretty badly on her arms, legs, buttocks, too). I've tried so many things to calm it down, to no avail. Other kids' moms think she's got a contagious rash, so I now carry a doctor's note that says otherwise. I really worry about how she'll be treated when she gets older.

Oddly, it's always worst on one side than the other. Her KPRF and her general KP are worse on her right side than her left. That seems so odd to me.

Right now i'm focusing on just keeping it under control rather then trying to find a cure for her, because she's not very verbal yet and I don't want to do anything that causes discomfort. But I'm glad I found this site so I can do research based on what real people are doing.
Sharon

flushedface · #13 07-05-2006, 12:27 AM

I get comments all the time about my KPRF. The amazing thing is that I get these comments from colleagues in a professional workplace. After about 10 rude comments from my boss about how I was always blushing and embarrassed, I had enough. I put a very sweet smile on my face and said- I have a rare skin condition that I am very sensitive about. I can't believe you keep making comments to me about it. It is a good thing people are not so insensitive to you and point out all of your physical deficiencies. It would probably make you a little self conscious.

Well, He was totally embarrased and has been extremely nice to me from that point on. Most important I felt better about myself for sticking up for my skin and refusing to let KPRF rule my life like a dirty little secret. Ever since I made this declaration, my KPRF has affected me less emotionally even though it has not improved physically. I will continue to search for a solution to this skin condition ( I only learned the name and the connection between my face and the back of my arms a few months ago even though I have suffered with both for over 15 years) especially since my son shows signs of both KP and KPRF.

This thread was very helpful and keeps me optimistic that there are others out there suffering and looking for an answer. I posted here so those newcomers to the board could find this thread as well.

THANKS to all of you!

knp833 · #14 09-14-2006, 02:41 AM

Quote:

Originally Posted by flushedface

I get comments all the time about my KPRF. The amazing thing is that I get these comments from colleagues in a professional workplace. After about 10 rude comments from my boss about how I was always blushing and embarrassed, I had enough. I put a very sweet smile on my face and said- I have a rare skin condition that I am very sensitive about. I can't believe you keep making comments to me about it. It is a good thing people are not so insensitive to you and point out all of your physical deficiencies. It would probably make you a little self conscious.

Well, He was totally embarrased and has been extremely nice to me from that point on. Most important I felt better about myself for sticking up for my skin and refusing to let KPRF rule my life like a dirty little secret. Ever since I made this declaration, my KPRF has affected me less emotionally even though it has not improved physically. I will continue to search for a solution to this skin condition ( I only learned the name and the connection between my face and the back of my arms a few months ago even though I have suffered with both for over 15 years) especially since my son shows signs of both KP and KPRF.

This thread was very helpful and keeps me optimistic that there are others out there suffering and looking for an answer. I posted here so those newcomers to the board could find this thread as well.

THANKS to all of you!

I know exactly what your talking about. Sometimes I just want to slap my boss in the face.

Thread Tools
Show Printable Version Email this Page
Display Modes
Linear Mode Switch to Hybrid Mode Switch to Threaded Mode

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)