How to deal with poikiloderma of civatte

[Hopeful41]

I am trying to find other people who have this condition.  I got a really bad sunburn when I was in my twenties and it has manifested itself in the condition I have today ( I am 41) 
Best way I can describe it - bumpy "chicken skin" appearance all over my neck and upper chest w/ interminent redness, burning, irritation.  It seems every day it gets progressively worse and almost anything can trigger changes in how my skin looks in that area. It looks really bad in the daylight so I try to avoid being seen, especially in the daylight.  I become almost panicky if I have to talk to people in a well lit area because of my fear of them noticing.
I have been to several derms and have had some treatments done without any good results.  My most recent treatment was to a plastic surgeon's office to at least get rid of the pigmented lesions that draw attention to my neck the chest (the nurse there removed some cherry angiomas w/ IPL and a seborehic keratosis w/ a tca peel)  That turned out OK - the tca peel area is still healing. I was told a full IPL would only address the redness and do nothing for the texture so I opted out of that.
I looked into Fraxel but due to the delicate nature of the neck/chest area, scarring might be a possibility. 
I am tired of going to clinics to be given false hope (and expected to shell out big bucks).  The last nurse who saw me was at least honest with me and told me there wasn't much that could be done, especially for the texture and just to focus on my "good" features. 
I am becoming very depressed over this and I find I am isolating myself.  I have come to accept that I cannot correct this and I am just looking for other people who might have this and how you deal with a condition that will never get better. 
I just want to hide and never be seen.  Unfortunately, I still have to go out in public and to work out of necessity.
Anyone out there who can give me some input and/or advice?
Thank you

[Bamawing]

Oh, that sounds horrible. I hate how the medical industry sees all cosmetic treatments as "vanity." It can really affect your self-esteem!!

We have many, many members who have visible skin problems, so you are not alone.

Welcome to Skincell. May you find hope here.

[Hopeful41]

Thanks for the welcome.   You are right about the vanity part.  This is considered so much more than just vanity for me.  This condition is benign but I am really suprised about the lack of sympathy and information from the clinics I visited.   I have had all sorts of advice dispensed to me (translation: try this or that laser) Some of them didn't even know what my condition was - I had to tell THEM!   
Thankfully, I started visiting some forums from people who had "work" done w/ lasers and did you know some people wound up being disfigured from those lasers that were meant to help them?   In the right hands, with the right skin type, the lasers can help people but in the worse case scenario, they can really do some damage but that's a whole other issue!
By the way, I found some sympathy,  help and advice from people with similar skin conditions rather than the medical community. 
That is why I am here.

[Bamawing]

You came to the right place.

I'm very fortunate to not have a visible skin condition (most of the time... sometimes it looks like something's wrong and people try to help by offering me lotions, my trigger). But I'm no stranger to this sort of problem. When I was a kid I had an overbite so massive that I looked disfigured. To this day the orthodontist has kept the molds of my mouth in his "before and after" section of the waiting room. I'm really lucky to have had parents that could afford braces... I really only started liking myself once my braces were in.

I hope you can find a similar solution.

[Hopeful41]

Yes, I've been there too regarding the condition of my teeth!  Funny you should mention that but I had these huge buck teeth but for whatever reason, my mom never got me braces.  She had a good job and had the money and I remember begging her to take me in to fix my teeth but she never did.   My teen years were awful (did I mention I also had acne on top of that? Hence the tanning/ sunburns!) 
I had to go through the younger part of my adult life trying not to smile and avoiding having my picture taken.  When I turned 30 I had the opportunity to get my teeth somewhat fixed.  I really needed the full set of braces but they were too expensive and I found a wonderful orthodontist who worked around my lack of finances and set me up with a retainer to at least fix the gap in the front teeth.  Within 6 months I had a beautiful smile and I get compliments on it to this day!! 
Unfortunately, now I have this "other" problem that proves to be unfixable.  I will say, the only good that came out of it is I practice diligent sun protection and I take really good care of my skin.  I figure, why make it worse?  Thanks for your kind words! 
Take care.

[Uncle Matt]

Hi there Hopeful!!
Welcome to Skincell

I hope you find something here to help

Matt