DSAP (disseminated superficial actinic Porokeratosis

[billy-george]

I developed this rare in UK, skin problem many years ago. I cannot get any treatment for it apparently it's a cosmetics condition yet it can become malignant. It's red, scaly itchy and painful at times. I'm unable to spend time in the sun at all. It may not be life threatening but it's life changing. Anyone else here have this?

[Heligan]

I dont see how its 'cosmetic' if its itchy, painful and can become malignant..... if only one GP has used this term Id be asking for a second opinion.

I don't have this though but I do have eczema issues with the sun, so I know exactly what you mean about life changing....Ive been stuck inside from March to October these last three years (its insane not even being able to go out to GP, to get groceries or use the Post Office).

Nothing is very effective for the eczema either (not for me anyway) despite the claims of steroid creams etc.... I find its two weeks of no exposure to irritants to get it clear with or without.... (so a whole lot of toxic for no real benefit).

Only thing I can think of to help is the ranges of UV stopping clothing, my issue is my face and Ive found covering up with gaiters, scarves etc works even though its very hot to do so in summer.

There's a range I heard about only the other day that is supposed to get cooler the hotter you get....Columbia PFG Freezer Zero, I was looking at the gaiters which seem to be out of stock everywhere (but I noticed they do 'arms/sleeves' too).

[billy-george in reply to Heligan]

Hi, thanks for replying . The risk of malignancy is only 1-2% and this it the reason it's classed as cosmetic. I have seen my GP on many occasions and have consulted 4 different dermatologists, 3 of whom were private so I had to pay which I was quite happy to do thinking I'd maybe get a more positive prognosis from them. I posted here because I know of no one else with this condition and would have loved to heard whether they'd had any success with treatment. It's a total waste of time going back to a doctor or dermatologist unless I have some useful treatment information. I am a member of a yahoo group for DSAP, everyone there is from USA, AUSTRALIA, and other areas of the world where the climate is usually hot. I'll keep researching

[Organic2016 in reply to Heligan]

Hi, I came across this natural and organic skincare brand called MooGoo from Australia. It is especially created for various skin conditions. Products available in the UK from some shops and farmacies. I bought online. It helped a lot of people, and I hope many can benefit from their products. Check their website moogooskincare.co.uk/. All the best!

[billy-george]

Thank you. I will look into this

[Lakeyl]

I also have this condition, and have had it for over 25 years. The only treatment I've ever had is to burn each mark off with "dry ice". It's time consuming and you can only get a few done at the same time. The area then blisters, then heals. The marks don't disappear, they just lose their dry scaly appearance. I lived in Australia for a few years, which is where it started. It's so frustrating. Can't sit in the sun as it make it look awful. I gave up going to the doctors years ago. No amount of moisturiser helps. If any one knows of any other remedy I'd love to hear .

[billy-george in reply to Lakeyl]

Hello Lakeyl. I have had a few frozen off but as you say it's time consuming and can be quite painful especially when the dermatologist freezes too deeply, which has happened to me leaving deep indentations in my skin. I have used many moisturisers but still those scaly areas remain. I have just ordered a cream called Moo Goo as suggested in an earlier reply to my post. If you are on Facebook there is a closed group on there of which I am a member together with a couple of hundred of other sufferers. It's called DSAP Institute and is very informative. Even if you don't want to try anything else it's a good group for support because we all know how you feel. Thanks for replying and good luck.

[Tanlover64 in reply to Lakeyl]

I have DSAP also, as far as i know there is no getting rid of it. Its depressing. I do sometimes use Sally Hansen airbrush legs, it a waterproof makeup. And i know its a pain in the a** but it helps my confidence when i wear shorts. It lasts til i wash it off. Not a cure but until they find a cure it helps cover the spots and gives mena little confidence.

[billy-george in reply to Tanlover64]

Since I posted 4 years ago, my skin is now so bad I cannot cover the lesions up at all. I have tried every camouflage cosmetic I can find, even the one you mentioned. I’ve had to just be brave and go without. Thanks for your reply. This is such a miserable condition ☹️

[fleurette]

Hello billy-george

I’ve had DSAP for nearly 30 years now.

It’s a hereditary condition -not helped in my case by living in Asia until I was 11 years old. Sun exposure is a trigger.

As mentioned before there is a very helpful DSAP website as well as a Facebook group for people with the condition.

Following a trial in the U.S,a new topical cream (available only on medical prescription) was recently discovered.

It’s called the 2/2 cream,which consists of 2% cholesterol and 2% simvastatin. This is a treatment,not a cure,but has been very successful in fading the ‘spots’ for many people. You will find the info on US or NZ dermatological websites. I’m not sure if it’s available in Europe yet .

Hope this lifts your spirits a bit !

[billy-george in reply to fleurette]

Hi fleurette. Yes I’ve been reading about the 2/2 cream. I’m not sure I’d be able to get it here in UK. Doctors and dermatologists in this country are pretty reluctant to give the go ahead for any treatment other than those they presume will help; which of course they don’t! I’m a member of the Facebook Dsap group and have followed the progress, or lack of, of those using 2/2 cream. Thanks so much for your input. 🙏

[fleurette in reply to billy-george]

I am also from the U.K. (Surrey) but have lived here in France since I was 21.

Seems the 2/2 cream is unheard of here. I think it will be available one day,but for the moment it only seems to be taking off in the US and Australia. Do let me know if you manage to get hold of it !

Good luck