I don’t understand why this is happening to me!

This is a question I received by email a few days ago. I thought the question and answers might benefit everyone, so I asked her if I could post the reply here.
QUESTION

 

Hi Lorna,

Firstly, I would like to thank you for all you have done to educate people about DSAP. It is wonderful. Although I wish I never had to visit your website, I am so thankful it is there for support. It has helped me tremendously.

Secondly, I was wondering if you wouldn’t mind answering some questions I have?

A little bit of background on my DSAP–I was diagnosed when I was pregnant with my first child in 2008 (I was 33 years old). I had probably 8-10 spots on my legs and that is it. I went to a dermatologist and he diagnosed me with DSAP right away. He told me to stay out of the sun but nothing else.

Fast forward 7 years with no flare ups and the original spots are gone–This past Jan. I had my first major flare up on my legs.I thought the spots were going away after treating them with Fluorouracil for about a month, but I recently had another flare up with more on my legs and now a lot on my right arm and a little on my left arm. I also have a couple of spots on my chest and my face.

I recently went to a derm and he told me the spots on my face are not DSAP. He said they couldn’t be DSAP because it doesn’t affect the face, and he told me they were freckles. I was very confused, because how do 5 freckles randomly show up in the dead of winter in New England? I am trying to do the Tazorac/Fluorouracil, but the itching is driving me crazy and while doing it I had a bunch more spots show up on my calves.

My question for you is, does this happen to you? It keep getting worse as you are treating it. I am just wondering if there is something deeper going on in body. I don’t understand how I go from literally nothing for 7 years to all of a sudden having them everywhere.My husband does have a terminal cancer, so I am under a tremendous amount of stress, but this has been going on for almost 3 years. It doesn’t make sense why all of a sudden it is happening so much right now.

Does trying to figure out what trigger the DSAP help? Are there any triggers for you? I also experience burns on my legs and arms from the creams. Does this also happen to you? Also, has yours ever gone away completely? Have you had a reprieve of time when you weren’t dealing with it? I read the results of the survey, and to be honest it was a little disheartening. Especially the part about the DSAP getting worse with age. I am 40 years old, and I can’t take it getting worse. It is very depressing.

 

ANSWER
I had my first spot appear at age 20, on my wrist. It was there for years. It was a single spot so I didn’t worry about it. Then when I was  25, in what seemed like overnight, my calves became  covered with lesions. I went to a dermatologist, who didn’t diagnose it but said he knew what to d,o so he froze them off. They looked much worse and I was horrified.

 

As I’ve mentioned, I’m not a doctor, so just issuing those disclaimers before I go on. DSAP seems to be happening at the genetic level. Researchers found that there was strong evidence that the mevalonate kinase gene (MVK) mutations link to DSAP. Normal MVK could help protect epidermal cells from UVA-caused apoptosis (collapse of cells). In other words,  a mutation in the MVK gene could prevent or reduce the cells’ defense against harmful rays from the sun. So, if you’ve had an outbreak “all of a sudden” this could be many years of cell breakdown  and now you are seeing the manifestation in the form of lesions. You mentioned that you are dealing with your husband’s terminal cancer, and that again could be the accumulation of stress over time breaking down your defenses. 

 

You asked if there are any triggers for me.
  • Every year I probably get more of them and every year I have to learn to deal with them more efficiently. A couple of years ago I didn’t have any on my hands, now I do. So it’s just one more thing I have to do before I go out, put some concealer on them. I also could swear I have some on my face. So far they aren’t obvious.  
  • The other trigger is heavy exercise, they become red and inflamed, but that goes away.  
  • Also, when I was pregnant in 2011 my DSAP was the worst it’s ever been, but that’s not surprising. You have about 50% more blood in your body, so all of the spots appear more red and obvious.
You asked if mine have ever gone away completely. Yes and no.  Some go and some come. I remember a time when I had some really stubborn ones on my forearm. Now they aren’t there but others are on other parts of my arm. But I have never had a time when they were all gone.  The ones on my arms are easier to conceal. The ones on my calves are tricky, they are darker and don’t turn white like the ones on the arms. Rather they become purple (for me).  I have to first moisturize and then I use DermaBlend to cover them up (here’s a list of concealers). It does the trick. Not perfect but good enough that I don’t feel self conscious. That or I’ve had it so long I don’t care as much.

 

Also, I’ve done the taz/eff protocol at least 4 times on my arms, so they are looking pretty good. I think I’ve nuked them all so they don’t look like dsap spots, rather whiteish discoloration that I can deal with.  But like I said, the skin on the legs doesn’t react as well. Yes, after about day 10 of that protocol they itch like crazy. If you have the time, I suggest doing one arm at the time. Once I did arms and legs all together and I was super grumpy to say the least.

 

I’m sorry I don’t have better news for you. At this time there is no magical cure for it, just ways to manage.  I remember years ago I had nightmares about it. I think I’ve come to terms with it and I don’t let it affect anything I do. Other than I can’t be quite as spontaneous as I’d like. If I’m going out in a bathing suit I need to put on the dermablend first and of course sunscreen.

 

Here are a few things that have helped me:
 1) Getting into really good shape. I’ve never been over weight, but I certainly wasn’t (or am) a bathing suit model. But I’ve been doing pilates and eating really well on the slow carb & whole30 diets. Now when I look in the mirror I am beginning to see the faint outline of my abs!  So while I don’t have the best skin in the world, I do have control over how much and what I eat and how much I exercise so I feel good in the clothes I wear.   I would feel worse if I didn’t look good in my clothes AND had DSAP.
 
2) You may not be able to completely get rid of DSAP, but you can manage it. So do what you can. If you have’t tried all of the ideas in this blog, give them a go.  I know you said the taz/eff protocol is painful, so maybe start with smaller areas. It has been the best thing I’ve done. 
Here’s a picture of my arm when my arms were healing up from a  taz/eff cycle, and here’s a picture of my arm right now, no concealer.

 

5712014-09-09 15.41.14IMG_8987

Forearm during Taz/eff            Forearm about 1 month after taz/eff         Forearm 6 months later

 3. Using self tanner and concealer.  I use Jergens BEFORE I apply the concealer. It helps to smooth the concealer on as waterproof concealers f are quite dry. This product is serving triple duty: It’s just the right amount of moisturizing, it’s a gradual self tanner, so no weird orange color or strong smell AND it’s SPF 20
 
Here is a picture of my leg before concealer and after. While not perfect, it does help my self confidence so I’m not embarrassed to wear what I want.
leg beforejergensleg after
Leg without Concealer             SPF 20 Jergens Lotion I use before DermaBlend            Leg after concealer

 

4. Here’s another post I wrote that has lots of other resources you can try out. Again, none of them are going to cure it… just get you to a place where you are less horrified and hopefully learn to live with it and accept it (but still always be looking for that magic lotion or potion!)

22 comments on “I don’t understand why this is happening to me!

  1. Hi Lorna,
    Thanks for this site. I got my first spot when I was 29. I am now 60 diagnosed with dsap after a biopsy 10 years ago. Like my husband says its a disease you only see up close. haha he’s great but this dang dsap is frusterating. I’m an outdoor kinda gal who lives in a dry climate and a ski resort. I have to remind myself to put sunscreen on. I notice heat turns them red and of course sun. Do you find when you use the jergens “glow” that the spots become darker? I feel like a spotted hyena. I did get a product that is like a makeup, oil based with color. It works nicely but if your not careful rubs off on clothing. It’s called Too Faced Royal Oil (coconut oil body bronzer) seems the best for color and doesnt make me me feel so spotted. Another one I tried was Tantalizer-bronzing. Did not like it as well. Pam

    • With the Jergens Lotion product, at least for me, it doesn’t make them darker. It’s a gradual self tanning product so you don’t get so much color at once as to make the outer ring noticeable. That being said, doing some periodic exfoliation will help.

      • Hi
        I have been using Tea tree oil for my DSAP. I apply the oil to my skin rubbing it in. Once a day. Usually at night. You will get used to the scent.
        I purchased it at a local store. Walmart cares it too
        Aura Cacia tea tree cleansing oil.
        it dries out the spots . The redness is gone. I am so happy with the results.
        this is the first time any thing has worked.
        My Dr has tried many things at a great expense but this has worked the best.
        Please try this and you will be amazed at the results in about a week. Email me .

        • I just purchased some and will start tonight. Summer will here fast in Texas. Sigh. How log did it take to see improvement?

          Thanks
          Laura

  2. Having lived with DSAP for 30 years now, I’m starting to understand this horrid condition. I believe that the problem lies in our skin. When exposed to UV light, our bodies somehow don’t repair the skin as well as other people — and that damage is to the DNA (which is a topic I know little about). This is a slow and gradual problem — by the time you first start to notice the condition, the damage is largely done. All those childhood sunburns had a price. The lesions start small and grow slowly as the damage accumulates. Only after a few years will you actually notice them. Look at your forearms under a magnifying glass and you will see that there are still plenty of other lesions that haven’t quite become apparent. When they appear overnight it’s because you finally notice somethings that’s being going on for a while, but you simply hadn’t given it a second thought. Once you notice one, chances are, there are plenty in a similar state by then.

    The lesions themselves are programmed into your DNA — the programming is faulty. Once you have one, you will always have it. It’s the same mechanism that ensures that your hand will always have the same five fingers, even as all the cells are replaced with new ones as time goes by. Your cells replicate in a way that ensures that what’s there will always be there. I’ve never had a lesion shrink or go away on its own – not once in 30 years. The only way to get rid of the lesions is to completely get rid of the skin having the faulty DNA — you can’t fix it any other way. Essentially you must amputate the lesion to get rid of it. That’s why freezing works, but only if you get deep enough. You must completely get under the programming that is producing the lesions. Fail to get deep enough, and all you’ve done is irritate the lesions — which love to show themselves off in a bright pink way whenever the opportunity arises. The trade-off is that the deeper you go, the more likely a scar is.

    For me, the light scarring is way better than those lesions, so that’s what I’ve favored. But it’s a personal choice — scars or lesions. I’ve removed about 250 of the worst lesions so far which is only about half of the total. In place of the lesions is light scarring which is gradually fading. People do notice the scars just as they did notice the lesions. My hope is that the problem is now heading in the right direction — the scars are fading whereas the lesions were only getting worse. (FWIW, the scars from the freezing I did 8 months ago are now mostly gone — with a slight mottled look rather than an even skin tone)

    • You just totally defined my “skin-life.” Found the first spot at 20 on my leg…now I am 46 and living in long sleeves and long pants no matter what the temperature. It is horrible! It took me three doctors to get it correctly diagnosed. I think there are so many of us out there. Why isn’t more being done to research it and help people (both mentally and physically) with this disease? BTW…self-tanners sometimes cause mine to become irritated…even the Jergens brand. Concealers work, to a point, but they dry them out and make them flake worse. I am desperate for improvement. I have done fluorouracil, but they only got worse and returned years later. Despite staying out of the sun (which I CRAVE), they still continue to get worse over the years. I would love to just have them fade…I can handle it if there is no cure…but just to have them not as noticeable would change my life. Because of them, I have become a terrible social introvert and recluse; not good for my family. Thank you for your candid post. I appreciate your insight.


    • Warning: printf(): Too few arguments in /home2/dsapinst/public_html/wp-content/themes/nectar-theme/inc/template-tags.php on line 87

      Thank you for this information. I am 54 years old and really started noticing my lesions in my late forties. I just tell people I work at a steel mill and these are burns from molten metal. I have run into physicians who do not know what this condition is. I do not care what or how many lesions I have. It has destroyed my love life but I figure I will be 55 in a few months. My life expectancy is maybe another 30 years. I can l7’ve with it

  3. In response to the original poster, I am 42 and also ask, why me!? It sucks, but I have realized there are things that would suck worse! I agree with Lorna that eating well and getting fit make it more tolerable, I also think less about it when I’m busy. Although I have been very anxious about the summer months (because I try to stay covered) I’m managing pretty well with some cute thin cotton tops from Eddie Bauer and I’m thrilled that maxi skirts are still in style.

    For me, one of the the biggest frustrations was feeling that I’m the only one!! I’m glad to support and have support and share ideas and concerns and maybe one day, together we will discover a magic potion.

    I have tried nearly everything listed on this website. The best results for me have come from a Cetaphil exfoliant to get ride of roughness and simply minimal sun exposure.

    With compassion, Mary

  4. LOOK,I LIVED A GOOD HEALTHY LIFE FREE OF ALL MEDICAL PROBLEMS.I AM IRISH,A FORMER MARINE 70% DISABLED ,VETERINARIAN,BORN 3/3/33 IN THE BLUE RIDGE MOUNTIANS,LIVED ON PALEO DIET AS WE WERE POOR HILL-BILLIES AND ATE WHAT WE RAISED(ALL NATURAL,EXCEPTION,SUGAR AND RICE.NO SMOKING,LITE ALCOHOL-MOONSHINE. SO I LIVED PURE ,NATURAL.”BUT”
    WHEN I WENT TO VA DERMATOLOGY FOR SUN SPOT,BASAL AND SQUAMOUS CELL.I WAS GIVEN BLU-LITE THERAPY FOR TREATMENT(MISTAKE).GOT BAD INFECTION AT AGE 79.TOOK ANTIBIOTICS FOR 90 DAYS,MANY TYPES.PLUS BATHED IN BLEACH.”GUESS WHAT” I GOT “DSAP”,THEN SKIN CANCER AND THE DOCTORS AND ALL RESIDENTS WERE DUMB FOUNDED OF THE DISEASE. I DIAGNOSED THE DSAP AFTER RESEARCH FROM AROUND THE WORLD,NEW ZEALAND,TWAIN RESEARCH,CHINA-1st DNA FOUND IN CINESSE WOMAN ON LOCUS 12 CHROSOME,IN RUSSIA THERE IS A SMALL COLONY IN THE BALTIC REGION,IRELAND,ENGLAND,SCOTLAND AND USA. “WOW”.
    NO CURES ,JUST PALLITIVE TREATMENT. YOU LIVE AND DIE WITH.I HOPE I AM WRONG FOR THE SAKE OF ESPECIALLY FEMALE A CURE.
    ITS A MALVALENT GENE AND IT TAKE A TRIGGER TO START DSAP.”AUTO-IMMUNE” IS THE CULPERATE IAM SURE AND DNA ALONG WITH WHAT THE HELL IS IT AND WHY DO DOCTORS NOT KNOW? GOD HELP US!
    LORNA,THANKS AND KEEP YOUR WORK ETHICS UP.

  5. SOME MIS-SPELLING ON POST BUT I COULD WEIRE A BOOK ON DSAP AND LACK OF DIAGNOSTIC KNOWLEDGE.SORRY I CAN’T HELP! I AM OLD AND WITH ONLY ONE HAND,MAKE MISTAKES
    SEMPER FI MAYBE VENI-VENI-VESI LORNA

  6. I am happy to see a website for dsap! I have had this condition for many years I had my first rough patch on my leg when I was in my early 20’a I am now 54 my legs and arms are covered in those white scaly red spots . I use a foot pumice carefully to rid my spots of the scaly skin. The only scrub I have ever had success with is the bath and body works spearmint eucalyptus scrub in the tube. I have stopped using soap as that aggravates it more. I use a tea tree soap and stay away from sulphur as well. I am also curious if anyone else is allergic to sulfites?? My dsap seems to get better in the summer when I have shorts on and short sleeve shirts. Winter clothing seems to be an irratant. I have had some frozen off seems to be a good fix this fall I will be attempting my first peeling . I am nervous as it looks painful. My dermatologist described dsap as a dandelion and that is why it is difficult to deal with, and that it is prior damage that surfaces after many years of sun damage . I am happy to not be the only one in the world with this ‘lovely’ skin affliction . I always joke that when people see me at the beach I say the moms say…. ‘Stay away from that lady who knows what she has’ I chuckle to myself because if I didn’t I would cry……

    • I was first diagnosed with DSAP about 10 years ago – just a couple spots on my legs. I am now 55, and my DSAP covers my legs and arms with more spots than I can possibly count. My mother was never diagnosed, but I am quite certain she had it as well. I have a lot of mild allergies, and notice that the spots get more “angry” when I’m stressed or have an allergic attack. I am also allergic to sulfa drugs and shellfish. Using any lotion with alpha-hydroxy smooths my scaly patches, but makes them extremely red. I am using aloe vera gel before my shea butter moisturizer, and have noticed that the spots on my arms are less noticeable. I can’t wear a dress, shorts or a bikini without wearing makeup on my legs – such a downer. It’s so wonderful to have this site to go to as a resource.

  7. Hi All,

    My spots are primarily on my arms and I found a derm. that diagnosed me correctly after being told by others that I had discoid lupus and precancerous (actinic keratosis).

    The new derm gave me Diclofenac Sodium Gel 3%. I use it morning and night. Then after it tries I apply 100% spf over it daily. I typically wear long sleeves to keep from further damage, but I’m seeing a lot of the inflammation and scaliness go away.

    It is a really frustrating condition. A great reminder to stay out of the sun though.

  8. It may be related to aging hormone levels slowly depleting. Possibly a relationship between that and a lack of immune systems ability to regenerate healthy skin cells. It seems to be more prevalent in middle aged people, (more often in women). I’m hoping an integrative MD will have some answers.

  9. Tamanu oil soothes the itchiness of my DSAP lesions and with a daily application makes flared lesions diminutive. It’s the only treatment that seems to work.

  10. I have had skin problems through out my life but in the last two years I have developed what I believe
    all of the above individuals have described. My derm did diagnosis this but really had not solution to
    the problem except for several creams which have not helped and after reading the above comments
    I now understand why as there seems to be no cure. My lesions are on my legs, starting on the back
    behind the knees and have continued to spread. I am wondering if receiving the Prolia injections for
    osteoporosis could have caused this as I now have read that skin problems do occur with some
    individuals. I have stopped the injections but my condition is not getting better. I am saddened by the
    fact there is no cure for this but as someone above stated, “it could be worse.” I do appreciate all of the info and know that I am far from being the only one with this condition.

  11. Thank you guys. I am just now trying to learn more, as I am a new member of the DSAP clan. If you have any tips on keeping it from getting worse. Let me know.

  12. Had these spots for a couple of years now. I am 51. yep, just get more as the years go by. Thanks for the website! I will try tea tree oil and Aloe Vera straight from the plant. I have MANY Aloe plants thanks to my sister-in-law.

Leave a Reply

Your email address will not be published. Required fields are marked *