Disseminated superficial actinic porokeratosisis is a rare skin disease that leaves red rough itchy lesions on the arms and legs. At this time there is no cure for DSAP so those of us with the disease must learn to conceal and camouflage our spots if we want to wear clothing that reveals our skin.
Luckily, DSAP doesn’t normally lead to skin cancer. But since it’s not life threatening, dermatologists tend to ‘blow it off’, and simply tell patients to stay out of the sun, leaving us feeling hopeless. I mean, who are we to complain? We aren’t going to die, right? We could have it a lot worse, right? Well, yes, we are all grateful that we aren’t going to die! But still, even though the condition is largely cosmetic, it’s also psychological as it inhibits what people wear, do and enjoy. Many avoid the sun altogether which translates to: no vacations in sunny destinations; no outdoor swimming, boating or outdoor sports, and the choices of clothes are limited to long sleeves, long pants and long skirts.
In other words, it’s a silent condition! We can’t complain, for for fear of being vain, knowing that others have it a lot worse. We don’t get much sympathy from our GPs and dermatologists as we know they see a lot worse and really have no answers for us, yet we do have to deal with people staring, asking if we have the measles, have had an allergic reaction or worse yet, if we are contagious!
DSAP can lead to depression as it plays with self-esteem. They always say, the better you look the better you feel, right? Well, if you don’t think you look very good, that can make you depressed! This is magnified by our media, every where you look you see beautiful people with beautiful skin. It’s enough to make anyone have skin envy!
Many with the condition feel extremely inhibited, so they are always covered up so that not even their friends and family know the full extent of the problem, so there really is no one to turn to. And women who are dating have major anxiety, as they fear what their partner will think about their skin, that they will be freaked-out by all of the spots, so that leads to intimacy issues.
I have even talked to people who tell me I am the first person they ever talked to who had this disease. Wow! Feelings of helplessness and isolation are never good. Thank goodness for the internet! If you are a first time visitor, you will find some treatment options for managing your DSAP (not to cure, just to manage).
Here are some easy things that you can do right now to take control of the situation:
1. Slather up! Use a good lotion twice daily (I recommend a alphy hydroxy lotion like AmLactin that has 12% AH)
2. Exfoliate. Try wet/dry sandpaper. Learn more about that here.
3. Use a good sunscreen, every day, even in the winter as UVA rays never sleep, morning or night, summer or winter. Make sure it contains at least 5% zinc oxide. Here are a couple we recommend.
4. Boost your immune system. According to a survey conducted by The DSAP Institute, 33% of people with DSAP have another auto immune disease so it’s super important that we boost our immune system however we can. Here’s an article from Harvard on boosting your immune system that’s worth a read. You can also take good quality supplements. The best one I know of is Epicor (watch video about it here). It’s a high metabolite immungen which helps the body to fight against bacteria. There are several choices of products containing Epicor on Amazon
5. Take “Heliocare
6. Go to your local drugstore and get a Scholl’s wart freeze kit. Learn more about that process.
7. Taz/Eff– Visit your dermatologist and get a prescription for tazorac/effudux- Read more about the taz/eff protocol.
8. Conceal it! Here are a bunch of concealers you can try. It’s trial and error on which one will work best for you.
9. If you haven’t already taken our research survey, please do that now. As we gain more insight into our disease the better prepared we are to present to researchers.
10. Participate in the DSAP Community! We post new articles weekly. Leave your comments and opinions in the comments section and read what others have to say. This is your chance to share with others just like you so you aren’t feeling all alone.
Talking with others who also have DSAP will make you feel better, and embarking on some of the DSAP treatment options listed above will not only help to minimize the appearance of your spots, but will empower you! Instead of doing nothing, do something.
BE SILENT NO MORE
In the comments section below, let us know how DSAP makes you feel. Have you ever felt alone, depressed, trapped or inhibited? Leave it all on the line. Don’t let this be a silent disease If you are concerned that someone you know will see this, just put in a fake name!
I used to feel so inhibited by my spots that I would even have nightmares about it. These days I’m not quite as worried as I’m probably a bit more comfortable in my own skin, I’m older, and I’ve tried many of the treatment options you have listed in the article. During the summer I absolutely use a concealed on my arms and legs. I wouldn’t leave the house without. Now it could well be a false sense of security but it makes me feel better!
Thank you from too! I bought the leggings albeit in New Zealand hadhad limited options and my family tell I look like a seal to sharks, made my summer bearable, embarrassing spots 🙂 keen to keep watching this site as you know there not many of NZ …. has any one tried gluten free?
Hi Rachel,
I live in New Zealand as well, in Auckland. You can get many of these items shipped to you from amazon.com. Things are so expensive here that even with the price of shipping from the US, it’s still cheaper.
Cheers,
Lorna
I went gluten free for six months and my regimen was strict like that if someone with celiac, but that did not work.
I do believe there is a good connection though because the best my skin looked was when I was on the first phase of The South Beach Diet. I thought I might try that again and then only introduce one new thing at a time but because there needs to be two weeks between each, that takes more discipline than I have been able to muster. 🙁
I have had this condition for well over ten years. It gets worse over time. I am so tired of looking strange and having people think I am contagious. Years ago my dermatologist had me Levulan ? Light therapy. Things got worse. I was hesitant to do much of anything else. I am going to buy some concealer and hopefully try the Scholls freeze. It is so hard when you live in a warm sunny climate. I look forward to getting the newsletter !
I am willing to try anything at this point,
Has anyone who cured your autoimmune. Problem and made your DSAP better??? Herbalists tell me its autoimmune and they can cure it but no money to try it
I have been suffering for 20 years in this dsap, kindly help me for better treatment
I have had DSAP for over 15 years, although only recently diagnosed. I have tried numerous creams, had spots frozen, and most recently went gluten free. None of that worked. I am now on day 10 of taz/efudex on my thighs. Really hoping for great results this time.
Kim,
How did the taz/efudex work?
I have had DSAP lesions visible since my late 30’s and I am now 63. I have now got it on my upper and lower legs, my arms, my chest and more recently my face. I have tried all the treatments mentioned. I cover up summer and winter although my consultant tells me that while the sun might exacerbate the condition it doesn’t cause it. He says it’s a gene mutation. The most effective treatments have been freezing for my legs and blue laser for my face. I didn’t find eff/taz very helpful or other creams like Solareze. I do find regular emollient cream helps to keep them soft. Although I have tried a number of alternative therapies none has done anything to alleviate the spots. This includes Perrins Blend, Vaseline, vitamin A liquid from capsules, bio oil and micro derm abrasion. Although the microderm did make the spots smoother.
I feel totally depressed right now with summer right around the corner. I feel so alone right now. I know I am not the only one probably feeling this way. It makes me feel very anxious and some what depressed. I use to love wearing short sleeves and shorts, not any more. Has anyone tried anything and had real success?
Mag, I have had dsap for a number of years and am feeling a lot like you do. Recently it has gotten much more noticeable and my son asked me what i had all over my arms and legs . It is summer here and very hot and hard to wear long sleeves and long pants all the time. I wear capris indoors but am so embarassed by all the spots I hate to go out in public in them . It feels like everyone is staring. I am going to try some of the things that people have suggested on here.
I have lived with DSAP for nearly 20 years, since age 42. Hence, I have been single for nearly 20 years. I have tried all of the treatments and none really work. The closest I ever came to getting a dermatology specialist to understand my frustration was during a visit two years ago. It was one of those “well there is no cure, it won’t kill you, here is some cream…yada, yada, yada.” By this time he had removed his latex gloves. I reached out and took his hand in mine and he followed my lead when I moved his bare hand along the top of my thy. Of course, he flinched. I asked him “What if this were your wife’s skin? How would she feel if you were to flinch every time you touch her? Please just think about that before you send DSAP patients away with a useless tube of cream.” I suppose at this point I am more interested in working to boost my immune system, soak in just a little vitamin D each day, and eat as healthy as I can. That said, I also exfoliate well, use a good lotion (I like Dial 7 Day), and to keep the spots less noticeable, I use a Dinair airbrush makeup that is matched exactly to my skin tone. I have tried the airbrush tan before, but for others that have tried it, you know that the ridges tend to soak up the dark color, just making the spots more noticeable. Matching my natural skin tone seems to be much better. If the ridges soak up any makeup, the result is pretty much unnoticeable. I only use a light layer of the makeup so it looks very natural and tones down the spots to where I feel I can at least wear crops and a tank top. Also, Dinair makeup is waterproof, so it will stay put all day long. Still, I find myself slinking around so as not to get too close to people I don’t know, as I HAVE gotten the stares and comments about the condition. The slinking around has become habit over 20 years I suppose. Maybe I will gain more confidence the better I get at using the airbrush.
I was born without a whole immune system, which obviously can be life threatening, I also live with chronic pain and a whole list of health issues like migraines, GERD, Tendonitis, spondylolisthesis, etc so you would think coping with porokeratosis would be easy for me, but it hasn’t. At its worst its like the straw that broke the camel’s back. I already avoid crowded places, get weekly infusions of immune globulin, take daily medications, watch what I eat, have weekly doctors appointments and now no outside or sun too? And I must itch? Two years into this I am doing better and learning to adapt, but any new diagnosis is a loss, and the more losses you deal with the higher your frustration can get. This is a condition that deserves research. When your skin is uncomfortable you feel miserable. I wish everyone with DSAP well. What is helping me is managing allergies and calming the skin. It feels like I am always applying something to my skin but the itching and redness is greatly improved.
At the end of my tether withy condition. I thought I was the only person with these horrible spots. I got my diagnosis 2day but there still going 2 do a biopsy. It’s good 2 talk 2 others suffering from the same problem. Just wish I could do something about it as it affects my life big time x
Lesley,
I know how you feel. I get so depressed this time of the year. Are you currently treating your skin with anything?
Hi, I’ve been suffering from DSAP for almost 20 years now. I’m 38 and I’m a male, which is a rarity for this condition. There’s roughy 15-20% of the DSAP cases that are males so it’s hard to find males with my condition to I can relate to. Just like all of you I’ve tried so many different creams and gels, concealers etc. This skin disease is depressing and can take a toll on your self esteem. I use to love the sun ever since I was a kid. My dad never had me put on sunscreen and I just went along with it into my adult years until recently. I hold out hope that there is a cure or something that can just be manageable. Sometimes I do feel alone with this and how people look at me. I hope that I can just one day except that it’s ok and live with what I have.
Hi all,
In my early 60’s now, so for over 20 years have been battling this. When I first went to a dermatologist years ago when the first spots appeared, he seemed to think it was more of an eczema and thought a tanning bed would be helpful (NOT), so I didn’t go back after seeing more pop up. It also happened to be when I was 40 and seems that is an age when they start rearing their ugly head. Unfortunately my sister also has them, and her being 10 years older than me, the writing was on the wall for my altered future. We are a very active outdoors family, live on the water and have a place at the beach as well. Needless to say, fishing in light cotton ankle length bottoms and loose 3/4 or long sleeve beachy tops is the norm for me while the rest of the family frolics in the sun and surf. I’ve learned to live with it, and did have a MOHS surgery done on one on my upper arm in 2016. That tiny spot, resulted in a 5″ incision/scar, so I wanted to do what I could not to have anymore progress to that stage if that was one of the original spots.
I do want to share some encouraging news in treatment with my DSAP sisters and brothers here.
My new primary care Dr who did an exam since I was a new patient (in 2015), referred me to a wonderful dermatologist at a well known teaching hospital. So many had not seen this condition in person, that they asked permission for residents and Drs. in learning to come see this unusual creature (me), lol.
She had frozen off quite a few and had me come back to start a regimen of the Efudux cream. She probably should not have told me “not to look on the internet”, since that is the first thing I did!!! It took me 2 months to finally get up the nerve to do one forearm as she suggested after filling the Rx. I applied the cream for 3 weeks 2x a day. After 3 days in, I started the second forearm. I will say, it was a hot mess. Red, irritated, crusty, depressing. I couldn’t imagine how this would possibly heal and not leave me scarred for life. I was scared I’d made a mistake and she agreed it may not heal as she hoped, but was worth a try as it wouldn’t be worse than it appeared before I started treatment once it settled down. Was my skin ever angry looking!!
Well, the great news is that it did settle down and heal!! I photo journal-ed it to be a reminder of how far I’d come and to get the courage to do my legs as my shins were so peppered as well as having deep crusty ones. Unfortunately the worst ones were right below where long capris hit so they were visible and would get sore or bleed if I bumped into something. There’s nothing like biting June flies nabbing you in one of your spots while at the beach in your long sleeves but with an exposed spot!
The good news is my arms were smooth as silk once healed, She gave me a Rx to help with the healing.
I did my legs and they were much worse during the process. Looked like I’d been zapped with hundreds of bee stings and all red. She had me stop the cream on my legs at day 16 as the results were what she was looking for. Apparently the dormant ones under the surface were awakened by the cream and came to surface, so again one big hot mess, but that was what we wanted. But I did it and the results were the best she had seen. She did say it would not cure it, but would keep them in check and more or less let me manage the spots as opposed to the spots managing my life.
My legs were also so smooth when healed (about 6-8 weeks). No scaring other than a few light spots where the crustier ones were.
Believe it or not, this week, I started another round on my ENTIRE arms, (yes, forearms and up to shoulder) as well as my lower legs!!! I must be nuts! I know it won’t be as bad as 2 years ago and they are actually just starting to pink up today and I can feel it working. I have the mindset that each little itch or burn is the war I’m winning against something I can’t cure, but can control. It will be interesting to see how many come to surface since there are probably only 1/10th of the spots as there were when I did treatment a few years ago.
I’ll keep you posted.
In friendship and compassion 🙂
Michele how are you doing right now?
I wonder if you also could how us or me some pictures from before and after.
And did you just use the Efedix creme? What is RX? Thanks in advance 🙂
Hello everyone….I was diagnosed with DSAP approximately 5 years ago. It is basically on the front of my legs and my arms. I live in the south and was a sun worshipper when I was younger. I am almost 64 and hate this thing. It is so embarrassing… always trying to hide my legs. Have some “beautiful” spider veins to add to the view. lol Anyway, tried a couple of things my dermatologist gave me, but nothing worked. Went for a visit last week and he told me to try Amlactin lotion. Will try it……happy to find all of you. I never knew anyone else who was dealing with this horrible skin thing…….Will try some of the concealers mentioned above and hope this new lotion helps.
Has anyone tried simply burning these off themselves, with a candle, eraser tip and a needle sticking out of it and heating the head to the needle up? I’ve tried this with a degree of success. It’s a little burning sensation that is tolerable; less doctors visits and deductibles and I find if I hit the DSAPS as they’re first forming, it doesn’t grow, causing me an even bigger scar, down the road.
HI everyone,
I was diagnosed almost 10 years ago with DSAP. I have felt hopeless as I used to have beautiful skin . Could wear shorts and dresses, but no longer. It definitely has affected my self esteem. I have not dated since being diagnosed, fear no one wants to be with someone with ugly skin. I am glad I have found this site I really felt like I was alone, I have never met anyone with this skin disorder.
I began a gluten free diet 6 years ago due to a joint tenderness situation. Having had DSAP since my college years that has gotten progressively worse ( I am 72 now), I was surprised to see a significant lessening of lesions to the point that I no longer get them unless I “fall off the GF wagon” and indulge in gluten containing food. I realize this requires changing ones lifestyle and acknowledge it is hard. I am not naturally given to adhering to a particular diet, but I just made up my mind to stick with this. Being GF has practically eliminated my migraines and my adult acne also. The results have proven to me that a strict adherence to GF is worth trying. Results for me began about a month into this lifestyle. I still have indications of previous DSAP lesions on my arms and legs which have faded some. Probably some diligent exfoliation could improve this as well as coverage with cosmetic products.
Yes me tooooo have had this stupid skin problem for years and no one till now has diagnosed me right, I have tried every cream under the sun, every pill you can take, Now this dermatologist says that this is the worst case he has ever seen, so with this being said , I too go covered up everywhere I go if I don’t I get started at too. I do have depression and anxiety over this, it is so hard to deal with no one really to talk to about it. Its very embarrassing.
I posted in March of 2019 about the connection between DSAP and gluten. I still have evidence of DSAP on my arms and legs, specifically the “rings” and dark spots, but I will only get a new active lesion if I eat gluten containing food. I live in an area that is hot and humid in the summer, but baring my legs is not something I like to do. At 74, I can choose to wear long, loose cotton skirts unless I’m cleaning house (ugh) or hiking, etc. I recently visited my daughter and indulged in a few gluten containing foods, cookies, wontons, etc. Sure enough, when I got home, I developed a new active spot on my leg! Gluten also affects my adult acne, my mood, energy level, sleep, and other aspects of my health. I am not a “health nut”, but I do observe how my diet affects my body. For me, absolutely no gluten in my diet is absolutely necessary for no new DSAP spots. That means NO GLUTEN!