DSAP - Disseminated Superficial Actinic Porokeratoses Chat Forum

DSAP is such an uncommon skin disorder that there is very little information available on it. I am not a doctor, but I've learned that amazingly (and sadly) the majority of Dermatologists either haven't even heard of DSAP or just plain can't recognize DSAP! ...General practice doctors? Forget about it!!! I found this out the hard way, learning 6 years later that I had some of these genetically predisposed spots that are brought on by sun and/or ultraviolet exposure (and in some cases possibly by some sort of relaxation of the epidermal immune system). AMAZINGLY I had visited 1 family physician and 4 dermatologists over the years before I finally got the correct diagnosis. These various doctors MISDIAGNOSED it as a fungus, "nothing", seborrheic keratosis, folliculitis, actinic keratosis (AKA solar keratosis). One of my dermatologists amazingly even did a biopsy for cancer before concluding that my skin condition was "nothing". Dermatologists most commonly misdiagnose DSAP patients as having actinic keratosis. In my case the one doctor who finally correctly diagnosed me was actually unsure whether I had actinic keratosis or DSAP or a combination of both. It is a major error for a doctor to misdiagnose DSAP as actinic keratosis because AK is a more serious condition. After having misdiagnosed or even after having correctly diagnosing a DSAP patient, doctors will often put the patient on a topical medication called Efudex (AKA Fluorouracil, Fluorouplex), which only makes DSAP look horribly red and irritated for many weeks or months, while really doing nothing to improve the skin condition. After reviewing many emails and guestbook posts I have concluded that Efudex is an aggravating waste of time when it comes to "treating" DSAP. This medication was designed for Actinic Keratosis - Not DSAP. Based on email reports from patients, I am of the opinion that you should also avoid any other medications that cause a harsh reaction (such as Levulan or "Blue Light"). Based on years of feedback from patients I have concluded that at this point in time there is no medication (topical or oral) that improves this condition.

Once DSAP has been diagnosed, the best thing you can do for improvement is to avoid further sun damage hopefully by using the strongest sunscreens and avoiding direct sunlight as best you can. Over time there really is improvement. Current "treatment" for DSAP is only suppressive or palliative (to try to make appear less offensive) rather than curative. Most patients (especially myself and those with light complexions) will argue that these harsh "palliative" treatments (like Efudex, lasers, freezing, and others) are a waste of effort and will worsen your appearance short term and may even worsen your long term appearance. I have however read and received reports of people's varying degrees of improvement from deep freezing and from using laser treatment, but for every positive report I get a negative report from patients who tried freezing (but wound up looking worse). Accordingly I suggest trying only test spots to start if you decide to venture down the freezing or laser treatment route. Read ALL of the guestbook posts BEFORE trying any treatment. Email as many people as you can with questions. Again, people with very fair skin might be best suited to just avoid freezing or laser treatment.

Getting rid DSAP spots (if at all possible) is certainly not as simple and easy as burning off a common wart. DSAP appears to be rooted in sun damaged DNA in your skin (dermis) and therefore it just keeps growing back. So I take any claims of DSAP "clearing" with skepticism. Is it possible to at least cosmetically get rid of DSAP spots (like pulling up a weed by the roots)? The guestbook post (below) are helping us get a clearer picture of this everyday. My gut feeling is that the only real DSAP treatment that will ever really work will emerge from an off label use of medication or combination of medications intended for psoriasis and/or actinic keratosis, or emerge someday from proteonics (protein expression) or stem cell therapy. Hopefully some of you visiting this page have the time and energy to try to get a University research fund under way. One of the first hurdles in getting research under way is finding patients to donate DNA samples. Fortunately as a result of maintaining this page for several years I already have contact info for many DSAP patients. I would expect that a good number of these people would be more than happy to help in research studies if one ever materializes.

DSAP is considered a rare disorder so most dermatologists have little (if any) experience with "treatments". Therefore it would be wise to do your OWN foot work and second guess your doctor's "treatment" advice, especially if they want to put you on a harsh treatment like Efudex, or chemical peel or extensive freezing treatment without trying test spots first and waiting several months. When first diagnosed, DSAP patients are often desperate to "try anything", and doctors feel compelled to at least "try something", however the best path may just be to simply make an effort to avoid the sun, wear strong sunscreen and take no medications at all, or maybe try "test spots" with various medications and/or freezing. Ask your doctor how many patients he/she has worked with. Just how knowledgeable is he/she? Does your doctor even know what DSAP is? It is YOUR OWN responsibility to find a knowledgeable doctor! Based on my experience there are very few who know their field inside and out. I believe that you might be best off finding an older (experienced) doctor who has practiced a long time and works out of an office with perhaps other dermatologists from whom they can get 2nd opinions. DSAP mainly effects people of European decent (white people) so perhaps you might get better diagnosis from a Caucasian doctor. There seems to be too little knowledge on the disorder. Much of the knowledge that IS out there is clouded and confused. But after reading this page YOU might become more knowledgeable on DSAP than the vast majority of dermatologists! I have sorted through the mess (by scouring the net, talking to some doctors and many patients) and finally created this page to share my experience, and for all of us to gather info from around the world about DSAP. Bookmark www.dsap.net and periodically check back for the latest DSAP news.

The combination of sun avoidance, wearing the strongest sunscreen (if you must go out in the summer sun), and wearing long-sleeve shirts (if you're outside for a prolonged time) can actually help reduce redness over months and years of time, and then with the combination of concealers you can actually look pretty good! When patients first notice DSAP, the redness usually looks pretty bad. Trust me you have a lot of improving to do once you stop hanging out in the sun. I believe that some of the redness of DSAP is maybe a bit like the knees you scarred as a kid. It can take months and years for that redness to improve. DSAP redness doesn't go away but it makes a difference to avoid the sun and wear SPF 65 or SPF 75.

SOME FACTS ABOUT DSAP

Analysis of DSAP shows altered DNA ploidy, chromosomal instability, and abnormal over-expression of tumor suppressor p53 protein.

DSAP is characterized by annular (round-ish), dry patches (or lesions) that eventually become pigmented (red, brown) with continued sun exposure, and (from my experience) from scratching /picking, and time. In a perfect world doctors would be able to identify DSAP years in advance when only a few faint round outlines of DSAP are becoming visible, with no discoloration (or sometimes with even HYPO-pigmentation). Areas effected are usually sun exposed areas of the arms and /or legs. I've read about other areas of the body being affected such as the back and belly. It effects the LEGS of women more than men (I have to theorize that this may be from wearing dresses rather than from genetic reasons). In men it is said to effect the arms more (than legs). In about 15% of patients the cheeks of the face are effected, otherwise (oddly enough) the face is usually spared. If a male patient has "keratotic" spots on their arms and / or legs but NOT on their face, a savvy doctor will pick up on this (as more of an indicator of DSAP than Actinic Keratosis). But don't rule out that AK (or DSAP) may be less prevalent on a female patient's FACE due to habitually wearing makeup (which can contain or simply act as a sunscreen). Nearly 1/3 of patients experience minor itching. For some reason DSAP is 3 times more likely in women*** (I have to wonder if this figure is off because men are less concerned with cosmetics and / or because men's hairy arms might obscure an otherwise unsightly cosmetic problem). The average age at which patients start to see DSAP become prominent is about 40.

***If anyone out there is an expert on genetics then maybe you can answer this:

Is it possible for an autosomal hereditary gene be 3 times more likely to be transmitted in women than men (as would appear to occur with DSAP)? If so why?

There is a phenomenon about DSAP that I have noticed (and so have other patients who have emailed me) and that is that the redness of DSAP spots always seems to appear rather suddenly.

This photo is owned by the name listed in black, and used here for educational purpose.

ABOVE: These are smaller DSAP spots. Perhaps 10 years earlier (or even just a year earlier), these spots appeared as nothing more than very slight raised borders (with NO discoloration) viewed only up close by a discriminating eye against a backdrop of light, and dry skin. The difficulty in getting early detection is that DSAP doesn't appear with hyperpigmentation (redness) until YEARS AFTER the accumulated sun exposure. While patients eventually take note of these raised borders as they become more and more defined, it isn't until a few years afterwards that the discoloration (shown above) seems to come on rather suddenly. People who have been so lucky as to be diagnosed very early on (before there is hyper pigmentation) really need to wise up to the fact that they need to make lifestyle changes and stay out of the sun starting NOW! There is a phenomenon about DSAP that I have noticed (and so have other patients who have emailed me) and that is that the redness of DSAP spots always seems to appear rather suddenly. Perhaps all in one summer it suddenly becomes a very noticeable cosmetic issue.

Larger spots typically aren't as perfectly round as this photo shows, and the raised outer borders are less defined in color in comparison to the slightly lighter centers. Larger DSAP spots may more or less look a solid redish or brownish color, thus causing a doctor to falsely conclude that it's actinic keratosis.

In most cases DSAP is inherited, but sometimes people develop DSAP (or at least have very high susceptibility to develop DSAP) when their immune systems are not working well.

Radiation therapy can severely exacerbate DSAP! You don't EVEN want to see the horrific photos of DSAP lesions that develop after going through radiation cancer therapy. If you have the DSAP gene AND cancer then I say radiation therapy is not an option. I say just kick the bucket in dignity (if all other cancer treatments fail).

Another disservice paid to patients by dermatologists is the failure to inform DSAP patients about hereditary factors. It is vital that family members be informed if a parent (or sibling) has been diagnosed as having DSAP spots! In the late 1960's it was concluded by a researcher that DSAP acts autosomal hereditary (meaning that DSAP is transmitted by an autosomal dominant gene). From my understanding of heredity, each offspring has a 50% chance of inheriting the DSAP gene if one parent has the faulty "DSAP gene". (And I believe either a 50% or 75% chance of gene transmission if both parents have DSAP). With these odds I'd say family members might like to know the risks! Keep in mind that a certain level of sun exposure is required before the lesions appear on the skin. (For example: one may have the DSAP gene BUT live in long sleeve climate, or habitually avoid the sun, or habitually wear sunscreen thus NEVER developing DSAP spots or significant DSAP spots). DSAP is brought on by sun exposure BUT other factors may be involved.

DSAP lesions have "thread-like" outer boarders, making them perhaps look sort of like craters on the moon when viewed at an angle against a backdrop of light. (Note: These "raised borders" are in actuality much smaller than sewing thread. Also the "thread-like" borders are much LESS noticeable when skin is wet from vitamin E, sun screen, etc. Skin should be DRY and oil free to really see the characteristic defined borders.) DSAP spots usually encircle pore(s) that are sort of "hardened", clogged, not functional, and stick up slightly.

CLICK HERE for more on DSAP diagnosis.

DSAP has been labeled as "pre-cancerous" but development of true skin cancer in DSAP is "uncommon" and in fact one study seemed to suggest that the only DSAP patients who developed cancer were those who very irresponsibly continued to be exposed to the sun. For most people DSAP is a cosmetic problem and a lifestyle changing problem but NOT a cancer concern. (note: I have received emails from people who have had DSAP for 40 years and been cancer free.) DSAP compares with actinic keratosis in which some spots can develop into cancer within 6 months.

I have heard talk of DSAP "remission" but it appears that those who develop DSAP slowly over the years do NOT experience remission. SEE DIRECTLY BELOW FOR MORE INFO on "remission".

DSAP patient skin cleared or not?

http://www.skinexpert.net/scientific/publications/psoriasis/tx_08.htm Disseminated Superficial Actinic Porokeratosis treatment with topical Tacalcitol - Markus Böhm et al., University of Münster, Germany, recently described a patient with DSAP whose skin lesions responded to topical tacalcitol. The 40-year-old woman had multiple, red to brown, annular, keratotic lesions, up to 1 cm in diameter, which were symmetrically distributed on the extensor surfaces of the upper and lower arms (see figure). The lesions had increased in size and number during the last 3 years and were unresponsive to topical corticosteroids, salicylic acid, and tazarotene. After topical treatment with 0.0004% tacalcitol once daily was started, pruritus (itching) soon ceased. Tacalcitol was well tolerated. After 3 months the lesions had faded substantially, and after 2 additional months they had vanished completely. <photos>DSAP lesions before and after topical treatment with tacalcitol 0.0004% over a period of 5 months. Webmaster's opinion: In looking at the photos I have to wonder if the doctor correctly diagnosed the problem. Is this really DSAP? It's hard to make heads or tails from these low-resolution before and after photos. These spots look brown, with no redness. Keep in mind that misdiagnosis is the norm. Or could this be a shameless attempt to sell a product? If it was in fact DSAP then this is very promising because it suggests that DSAP spots are reversible! The problem is that I HAVE NOT HEARD a single report of DSAP clearing from anyone who used D3 analogues like Tacalcitol (or Dovonex, etc). And I've been running this site since 2000. Go figure.

Don't forget to leave a donation in your Last Will for DSAP research. I suggest donating to the UCLA School of Medicine or UC Irvine Stem Cell Reseach Center and specifically for the purpose of DSAP research or skin research. I am currently too busy to research how to establish a fund. This takes man/woman power! Anyone who can assist in setting up a research fund please contact them / me!

Due to "spam-bots" I must post the link to the guestbook in graphic format so that only human eyes can read it. Simply add the forward slash and "h" and the .htm and you will get to the guest book. ; )