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” 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!