Share your thoughts and questions on KPRF

[KPRF.re...@gmail.com]

What have you learned from different doctors or dermatologists? What
treatments have you experiemented with? This is an area to voice
anything and everything about KPRF.

[lel...@aol.com]

My son has the conditiion along with the thinning of the eyebrows. We
have tried elidel, retin micron A, and homeopathy. Nothing seems to
work. I do believe that the retin micron A makes the skin look
smoother and less red, but you have to be consistend and it takes time.

[KPRF.re...@gmail.com]

I also have the condition with the eyebrows. It's called Ulerythema
ophryogenes. The doctors prescribed both Pro Topic and Desonide lotion.
The Desonide seems to work the best for me but I was warned not to use
it very often because it tends to thin out the skin. My eyebrows have
been falling out for a while now and are very sparse. I first realized
I had this condition when I started having a lot of flakes within my
eyebrows. Then I got redness and some started falling out more on the
outer half.

[cheeks]

My old dermatologist wanted to do "experimental laser surgery" on me --
I'm pretty sure he had NO idea what he was talking about! He acted
like he'd never seen such a thing in all his life. I will never go
back to him! Other than that, I've pretty much been told that there's
nothing I can do! Please tell me this is not true! I would love to go
to another dermatologist now that I'm married, but my insurance right
now is not that great!

[KPRF.re...@gmail.com]

The last dermatologist I saw was a very well known derm in my area so I
felt very confident that she would be able to help me.

The first time she ever saw me and after examining my skin her reaction
astounded me. She said that she had never seen skin like mine and that
if I was an 80 year old man she wouldn't think anything of it but
because of my age and my skin she was amazed. (I was 20 at the time and
she has probably seen 1000's of patients in her lifetime)

That just makes me realize how uncommon and rare this particular
condition seems to be.

My first appointment I asked her if she thought it could be rosacea
because of all the similarities. She said no. After tests, skin
biopsy's, the use of medication, and a grand round with about 20 other
dermatologists at a hospital in the area...she came to the conclusion
that it must be rosacea. This conclusion made me very frustrated after
months of seeing her and going through tests. Usually if someone has
rosacea, it's somewhat obvious and diagnosed right away. It just made
me feel like she really didn't know what I had and to cover herself
from the embarassment of not knowing what it was she just went back to
the rosacea thing after being certain that it wasn't in the first
appointment. My take is that she basically just gave up on me.

After the last appontment, she prescribed some rosacea stuff and told
me to come back in 6 months...6 months!!! That's outrageous. I've never
gone back to her.