spots on skin

Nancy Curran emailed me this link today.

http://dsap.net/

LAST UPDATED: 7/21/09

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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.

I am trying to assess the effectiveness / ineffectiveness of various drugs that DSAP patients have tried. In particular I am looking to survey LONG TERM effect, as some patients may claim initial "success" but later lapse back to their previous condition or worse.  Please contact me with your stories so that I can form better opinions to report on this site regarding "treatments".