When I was just about 21 year old I noticed a spot on my wrist. I didn’t think much of it. But by the time I was 26 the backs of my legs were covered in red spots. I went to a dermatologist who froze them off. They scarred pretty badly and from that point on I was super self-conscious.
I still didn’t know what these red, scaly spots were. When I was 28 I went to another dermatologist who didn’t know what it was either. After two biopsies, we got the diagnosis– disseminated superficial actinic porokeratosis– WHAT?.
The dermatologist had never heard of it so I tried cream after cream with little results. Years passed by and I remained very self-conscious about these spots that seemed to be multiplying. I love the beach, swimming and outdoor activities so this really weighed on me.
I bought clothes that would conceal them and didn’t buy clothes that would show them. I even dreamed of these spots (or were they nightmares?) Finally, I found some body cover up creams that seemed to do a decent job of camouflaging, so mentally that made a big difference and liberated me to dare to show some skin again.
I’ve also tried several different treatments that have had some results. Nothing works THAT well but at least makes it more manageable. I realized that all of this hiding is my own mental hangup, so now at 44 years old I’ve grown into it a bit more, or should I say, I don’t care quite as much if people see it or not. I do my best to wear sunscreen, wear a hat and be sensible, but I no longer hide. (How can I with an energetic 3 year old who loves to play at the beach?)
I started this blog and the DSAP Institute to build a community of “DSAP’ers” to share information and most importantly to gather data about this disease to present to the medical community so that a cure can be found. I will be posting articles on various treatments, products and inspiration. And look out for videos and podcasts with other DSAP’ers who can share how they live with this disease.
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I am so happy that there are people out there with this besides me and understand what this is all about. I really wish the research universities would do some genetic testing and studying on this
In hopes of a cure. I truly feel it is a genetic mutation of some sort even though my parents did not have it. We need studies on this. Did any of us have birthmarks ? Did any of us develop skin
Cancer? Where was the cancer in relation to dsap? What kind of skin cancer did we get? What
Nationality are we? We need to be more specific than just “white”. Where do we live? Where
Did we live the longest? When did we first notice them? Did they progress to other parts of the body? Where did they progress and in what order did they progress? Do your siblings have it?
Do your children? I am sure there are med students in research that would love to explore this disease further as it seems to be in “uncharted waters”, and an area where great recognition
Could be obtained. Is it auto immune related? There is lots of money in auto immune diseases
Because of AIDS – there must be some research hospitals willing to take this on? ?? We need
To get this disease out there. Do we have a worldwide dsap day? Do we have dsap t shirts?
What color represents us? Can the cosmetic companies donate for a cure? Let’s think global
And see what countries have the highest cases. Where are the populations located? Is there a common denominator? We cannot just do nothing. If we are not part of the solution, we are part of the problem. If we could tie it in with skin cancer we may get more support. I myself have suffered with basal cell since my early twenties and it has spread from my face into my eye. I have had countless surgeries, and radiation . I had to leave my job in 2012 because of a reoccurence
And now have poor vision in the eye that cannot be corrected with glasses. I have lost my eyelashes and eyebrown from the radiation. They almost removed my eye in 2012. Skin cancer is no picnic, but even with that the focus is on melanoma-because it is deadly. However, basal cell
or other skin cancers and diseases like dsap should not be taken lightly. Hopefully, in your lifetime
There will b a cure. I never thought dsap was serious, but now I think differently as they have
multiplied, grown together and bled.
Wow, thank you for all of your input, I have already added in some of the questions you suggested, and those are wonderful ideas for promoting our causes… I love them! Thanks again for taking the time to leave a comment and I hope you will check back here often as we’ll be posting articles a couple of times per week
Thank you for your kind words and taking on this cause. I will be checking back:)
Patricia, if you would like to write a guest post on some aspect of DSAP you find interesting, I would be very appreciative. For example, I was chatting with another gal with DSAP who specializes in essential oils. She is going to write an article on how essential oils may help DSAP-y skin. Let me know and we can email about it. Cheers!
Thank you for all your work to get all of us with DSAP informed. I will let my sister who also has DSAP know about it too.
I’ve have tried prescriptions such as solaraze twice and others things to peel off the bad skins cells. It cleared up for a little over a year and the spots started to pop out again. I feel as though dermatologists have no interest in our DSAP because it doesn’t affect them. If more of the population had it, there would be more research done for our plight. At this point I try to be good to my skin as I’m getting older and my skin is getting thinner as I age. I’m still having trouble accepting the fact that I will never look like other people.
Thanks for sharing your story and your photo, you are beautiful!
Lorna
Thank you Lorna for putting this site together.
The first few spots appeared on my forearm at age 27. My dad, aunt and grandfather also have the condition. The spots did not progress very fast over time and most of them did not have much redness or color to them. Through my thirties i would have a bad flare up from time to time, due to excessive sun or intense physical excursion. However, I turned 44 this Summer and had the worst flare up, all the lesions turned red, many scabbing and bleeding. The lesions don’t seem to loose their color this time. I live in Florida and love the outdoors and water and have not been very good about sunscreen and covering up. Definitely paying for it now. The spots run the length of my legs up to bathing suit level and the from my shoulder down to my hands. While examining my face to day, noticed some red spots, sure hope it is not DSAP too. Facial Skin is a lil different than leg and arm skin, so it is hard to tell.
Felt pretty vain going to the cosmetic counter at Dillards to aquire some Dermablend for legs and arms, but just got ridiculous this year. Not going to let it keep me from being outside in the sun, but definitely going to start applying sunscreen and covering up more.
If there is anything I can do to help support the cause let me know.
Dave
Hi Dave, thanks for commenting. Have you tried the ‘taz/eff’ protocol to help clear any of them up? I have done it once a year for the last 3 years and it’s not perfect but does help to clear some of them out. Works better on arms than legs.
As far as helping to support, just keep leaving comments on the various articles. I think everyone sharing their experiences as to what has and hasn’t helped is the best support. Also, if you haven’t taken the survey, please do that as well. Once we have a few hundred responses, I’ll do a reporting, but I don’t want to do it before that as I don’t want to propagate false info!
Thanks Lorna for your prompt reply. I did fill out the survey.
I may give the “taz/eff” a shot sometime in the future.
Today, I tried the wet/dry sandpaper (600 grit) trick that I learned from your site. WOW, what a difference, smoothed the spots right out and made them less noticeable. The raised borders of the lesions were just too tempting to pick at, which made them worse and bleed. I can run my hand down my arms and legs with out wanting to pick the tops off the spots.
Thanks again for building this site and helping make life more managable for DSAPers.
Very well done and the articles have been very helpful and encouraging.
Thank you so much for creating this website. You have made me feel not so alone during a tough time. My husband has a terminal illness (cancer), and I recently had a huge flare up with the spots because of a stressful time we are going through. I was diagnosed with DSAP when I was 32 years old, and for 7 years I had no major flare ups with the spots. The past two months the spots are everywhere on my calves and even mid thigh. I am right not on the the Fluorouracil and it doesn’t seem to be doing much, but I have only used it a few days. I live in the Boston area and would like to see the best possible dermatologist our there. No doctors really seem to know much about DSAP. It is very frustrating. I will go wherever I have to and spend whatever I have to, to get treatment, the problem is there is no much treatment available.
Hi Magan,
wow, sounds like you are really going through a lot. Sorry about your husband. I think many of us would pay any amount of money to get rid of this condition but unfortunately there just isn’t a real cure, just lots of work arounds!
Are you using the tazorac along with the Fluorouracil? If you aren’t then it really won’t do anything. There is a post about that in the blog, called the taz/eff protocol.
I’ll be publishing a new post soon about the results of the survey (if you haven’t taken it please do!) We have almost 250 responses which is the biggest survey of DSAP to date.
Best of luck and stay strong.
In Health,
Lorna
Hi Lorna,
I did take the survey. Thanks for asking. I look forward to seeing the results.
I am only doing the Fluorouracil right now, but I have another dermatologist app. on Mon. and will ask for the Tazorac.
I recently spoke with the Assistant Head of Dermatology at Harvard Medical School about my DSAP. He pretty much confirmed everything that you have said on this website. He did say the spots could eventually resolve, but from your own personal experience it sounds like yours have always come back?
I seem to have very red spots on my legs and just circular spots with a brown spot in the middle on my arms and now on my face. The spots on my face almost look like bad acne scars. I am getting extremely bummed out that the spots are now on my face. Do you also have different type of spots on your body?
Thanks again for all your help Lorna.
Take care,
Megan
Hi Megan,
no, my spots have never “resolved” unfortunately.
The spots on the back of my calves are the worst. They are basically now scars as I’ve done the taz/eff protocol so many times. When I’m cold they look purple, when I’m hot they look red. The spots on my arms are easier to cover up. In the last couple of years I have got them on my hands and I hate them. I will try the wart removal kit for them when summer is over (I am in New Zealand).
I have 1 spot on my face. It doesn’t look like acne probably more like rosacea.
Definitely get the tazorac!!!
-Lorna
Hi Megan,
I too am from the Boston area and have been diagnosed. I have about 60 white spots on my arms and legs. I have an appointment with a dermatologist at Mass General in January. I noticed your post is from February, have you found anything since then that has been successful? Also do you have a name of a dermatologist in the area that is familiar with dsap? Any information would be greatly appreciated.
-Kerry
look, I go to the va and all they give me is flurocil,tretolin,solorase, and what ever kind of pill they can come up with.”nothing works”,so try to live with it. some say ruby lazer works ,but I have not tried. Its a life long disease and in the DSA is found on “locus 12”. God it’s horrible and I am a man ,thank god I am not a poor woman who is exposed and is cosmedic.
no cure,just death is the relief,eventually and god save the children .50% will get it thry the malvalent gene!
I even took a pill called and it almost killed me “started with an A” used trimcinoline 1% ,aldara(imiquimod)tretimoin,. but found some relief in anti-ich cream(zinc acetate,diphenhydramine.stopped the buurning and itching. cures nothing. we are screwed. sorry.
Finally to find other’s with what I have. Mine started in my late 40’s…not almost 60. It really reared its ugly head after my 2nd spinal surgery…Neurosurgeon asked what happened on my follow up? I asked “what did you do to me? ” thought maybe the surgery? as it involved using x-ray along with my living in Fl…and yrs of sunbathing… that maybe the multiple surgeries tipped the scale? They have regressed over the yrs especially in winter, but allergy time seem worse. Right now they are red again on my arms…the legs are all brown spots…I have done ALL the treatments and freezing them yrly…creams etc make-up…being single brings such cosmetic issues. I am tall and my legs were my best part, now I hide them…I can’t believe there isn’t something we can take that would reduce the inflammatory aspect of this?
Update: I since have gotten Squamous cell carcinoma on my lower shin…about the size of my thumb nail, raised off skin and removed with margins. I will now be even more sun protected.
1st off thanks you guys for having this sight!!! This is BIG TIME helpful for it defiantly feels like were not alone out there. My name is Guerre Fabacher(male) from New Orleans and i was diagnosed with DSAP at age 27. Over the years i was able to deal or manage the spots as i went about my daily activities.
Guys, over the past 6 months it has somehow exploded out worse then ever! One short story i can tell you that hit home was i on set for a movie being filmed here in New Orleans and one of the assistant directors has made a jesture (” what is that on your arms”) about my forearms with lesions trying to camouflage them in make -up. I am totally totally emotionally drained on what to do with this. I feel like its something so silly because people have much worse things out there to deal with i know then this but everyone recognizes it then you have to explain what the heck it is. Its to the point now where sadly it is affectioning my career. Im a personal trainer , run large group fitness classes and in the sun quite a bit. I also do T. V. and local commercials around town. My question to you guys is.. if anyone knows of a specific dermatologist who knows how to keep this stuff at bay and deal with it – i will do anything it takes to go see him or her. Its really gotten to the point to where it is affecting my lifestyle and occupation now. Thank you guys so much for reading and sharing …. it really is a feeling like i have never felt before. Would love to somehow someway make it manageable again! Any info would be greatly appreciated!! I can also and don’t find showing pictures of my arms if that helps.. see you guys and God Bless..
Has anyone explored high amounts of vitamin D (via a doctor). I’ve just started to look into the Comibra Protocol, initiated by a doc in Brazil to treat automuine diseases.
I have battled this condition for probably 30 years and could not get a diagnosis until today. I am now 82 years old and a widow for 6 months. I decided to try a female dermatologist and she just called today to tell me that tests that she has done came back as DSAP and she will discuss it with me at my appointment next week. After googling it I see there is no cure and very little for treatment. I guess it could be worse, but I hate it. One thing I can report is that I am no longer getting new spots and what there is getting lighter. I am still active and in good health.
Hello there,
I am a Belgian, Flemish woman 65y. I have been diagnoses DSAP yesterday. I had Some red spots on my arms and leggs, since about 2 years, and as I live at the Sea I remarked last year that there was something wrong, even after applyong 50+ sunprotect.
When I was 25 I got psoriasis on my headskin, arms and leggs and UV ligt and Psoraleen medication helped. I no longer have Psoriasis, it stoppen suddenly several years ago, like a miracle, but now in return this : DSAP! I am depressed. Good luck to all of you.
Hi there, so sorry you were diagnosed, it is depressing for sure. Have you found our Facebook group? Please join us for support. https://www.facebook.com/groups/DSAPSKIN/
After reading all these comments I don’t think there is any hope very depressing condition
My daughter is very depressed with the condition wish she could find help !!
I have lived with the condition for 30 years also tried everything!!
You would think in this day & age there would be a cure?
Never had blood tests for this I do wonder if the cause could be found through this }
Hi fellow sufferers! It is frustrating having a condition that is unsightly, degenerative and one that I find a bit scary in that the lesions on my arms and legs may be masking serious skin malignancy! My aunt has this condition and had laser surgery which reduced the redness and dry scaly appearance. What I find quite interesting is the idea of abrasion being of some success…..(I have been through the cream regimens with little improvement) I have noticed that the skin under where I have a watch on is not affected by the DSAP? This skin is smooth and unmarked, making me wonder at the benefits of regular, gentle exfoliation and trapping in of moisture? Any thoughts?
Kind regards, Nikki
Aloha, I have had DSAP for as long as I can remember, at least at the age of 10 and I am now 43. However, I had no idea what it was until July of 2018 when I was finally diagnosed with it. Other doctors had told me they were age spots(at age 30) while other doctors had no clue. They have come and gone throughout my life, never really going away but never getting to the point that they had reached of constant inflammation this last year (Jan-July). I live in Hawaii and always wear shorts and t-shirts or bathing suits, and I always noticed them but my kids and husband never seemed to notice (or at least never said anything). That was until this year, it got so bad that I was embarrassed to wear shorts or short sleeved shirts and my family looked at me with horror in their eyes asking me what was wrong with me.
The doctor that diagnosed me also looked me straight in the eye and said, “there is no cure, I can prescribe this $400 medication, but don’t get your hopes up”. To which I responded, “Oh will find a cure to this, I believe in healing myself.” I got the tube of Tacrolimus ointment and still have not even opened the tube. Instead I began my own regimen which has TOTALLY WORKED! I would love to share, but I’m wondering if anyone is still reading this blog as the last dates on here was back in 2014. I have before and after pictures that are amazing, but I’m not sure how to share them on here. If there is anyone still reading this and/or there is a way to post pics please respond an let me know and I’ll share my very inexpensive cure for my DSAP as well as the pics to prove it. Living in shorts and t-shirts again and feel like I have my body and my life back!! There is hope!
Summer
HI there,
yes this blog is still active, you may just be looking at an old post or comment. But all of the information is still relevent.
We also have a private Facebook group that you can join that is very active. https://www.facebook.com/groups/DSAPSKIN/?source_id=1551632221726317
I have a family member who is living withDSAP and is very depressed about it
Could you send me details of what inexpensive amazing treatment you used to clear dsap. I would be so grateful if you could reply so I could recommend it to them
Thank you
Would love to know shay you used to clear the disappointment yourself as a long term sufferer myself
Please email me with the information – I am desperate to try anything that may help
Summer, Which I could hear how you got rid of DSAP with home remedies. I’ve been trying different natural modalities for many years with no results other then keeping the skin lesions at bay some and the itching down. I’ve been wearing a make-up some to cover up the redness and now looking for another make-up because they discontinued the one I was using. I got the DSAP at around 30 years of age and I’m now just turning 70. I found out I had it when I was 43 years of age. I’m very careful of the sun because the sores start getting reder and start to itch a lot; My mother had these spots also and I use to notice them and no one knew then what she had; If anyone knows of a good make-up-cover up for them please let me know; Terri-Lynn
Hey! Could you post your pics and what measures you took to help the condition!! Thank you
Summer, please share your home remedy with us. I am desperate and have tried everything.
Deb
Summer, please share your home remedy on here
Carolyn