DSAP: The ‘Silent Condition’

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.

  1. SPF 40 Citrix Antioxidant Sunscreen
  2. Solbar Zinc SPF 38

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” for extra sun protection – According to their website: HELIOCARE harnesses the natural and powerful antioxidants in Polypodium leucotomos extract to help preserve your skin’s ability to protect against sun-related effects and aging

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!

 

15 comments on “DSAP: The ‘Silent Condition’

  1. 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!

  2. 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

  3. 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 !

  4. 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

  5. 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.

  6. 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.

  7. 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?

  8. 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.

  9. 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.

  10. 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

  11. Lesley,
    I know how you feel. I get so depressed this time of the year. Are you currently treating your skin with anything?

  12. 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.

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