What is PDL? Where can I find it? Actually my derm did not recommend any alternatives. He had merely asked me to live with it....

Regards
Terry[/quote]

Hi Terry

PDL - stands for 'Pulse Dye Laser' - the mostly used model of PDL is the 'VBeam' made by Candela. There should be someone in your State/County that has one. What area do you live in and I can perhaps have a quick search for you.

The PDL targets the abnormal blood vessels that cause redness. However if the redness is just surface stuff from the KP bumps this will come back. If redness is under the dermis (top layer of the skin) it will help normalise this.

It can take more than one session though for this to happen.

Hi Anne

I reside in Singapore. I think PDL treatment is not available here.

Is/Are there researchers in NZ whom is/are currently investigating on the manifestation of KP skin genetics "root"?

How much does each treatment cost? Do you have a before and after treatment photo?

Best wishes
Terry

Hi Terry -
1) I did a quick google and PDL is available in Singapore - this was the site that was first to come up:

http://www.nsc.gov.sg/cgi-bin/WB_Con...?id=145&gid=33

You will have to contact them regarding the cost. In NZ my first treatment was $2,000 NZ but the second I managed to get a few years later from another derm for $750 NZ

2) As regards to genetic research I think it is pretty well established that the genetic coding for KP is located on chromosome 18p.

Because I have KP, UO, AV and KPRF and my son has a congential heart condition plus some of the above symptoms a genetic professor in NZ is looking at us from a purely genetics interest point of view. Some of the rare KP variants often appear with heart defects in other syndromes such as noonans and CFC syndrome.

3) Sorry I do not have access to the before photos taken by the derms. My skin was quite red (the derm said it reacted to the laser like a port wine stain)
with a mass of damaged vessels. My redness has faded to more of a dark pink after two treatments. I will probably need at least 2 more treatments to get near normal skin tone. Depending on your blood vessel damage you may need less. I will find the Candela Vbeam site and post it below - there you can see before and after photos.

http://www.vbeam.com/vbeamBrochure.pdf
(quite a lot of reading but has heaps of before and after photos for you to look at)

Wishing you all the best with your treatment.

Hi again Terry - just had a bit of time to myself tonight so did a bit of googling on KPRF and vbeam treatments. I came across this thread on anther forum where someone had had the vbeam laser treatment for KPRF and had found it helpful.

You might want to have a read:
http://www.esfbchannel.com/cgi-bin/y...num=1123622755

Hi Anne

Thank you very much for these informative website. I'll have to check with my derm to see if they could do it for me or not.

I think the saddest thing in life is when one's family isn't supportive and could never lend a moral support for me. Every time, when I tell my family members about how sad I am on my KP conditions, they will utter that I am overly conscious about it and it is normal; perfectly all right for a guy. Well, my inner thoughts think otherwise.

I have been seeing a psychiatrist about my condition and he had challenged me into wearing short-sleeves shirt and walk down the city for a day.... Frankly speaking, I dare not!

Thanks Anne, you have been a great friend and help in the KP community forum. I pray that your family and yourself be well, and happy always.

Terry

Thanks for your kind words Terry. I come from a supportive family however even they struggled to understand what is really wrong with my skin and what effect it has had on me.

When I was growing up it was just something that 'Anne had' - no-one knew how to help me and really no-one really talked about it. So the KPRF, KPAF and UO became a problem that I dealt with alone.

I think it is so neat having forums like this where you can talk with people who have 'walked' in part where you have walked.

I sincerely pray for you to that you would be able to find an effective treatment but also just as important come to terms on the inside with this condition. I think sometimes the latter is harder than the former.

Anne