Any Disseminated Superficial Actinic Porokeratosis (DSAP)

First. DSAP certainly isn't at the top of the list for cure resolutions due to its genetic rarity. Second, like most meds or compounds, they never resolve the issue, they simply help you tolerate its existence. I'm sure there are many variations of the condition that a, "one type of application or med" will not be our future unless some researcher decides it may be worth another clinical trial.

I don't know anyone else living with DSAP, and I feel like I need to hear from people who truly understand.

I am a 42yo female and I was diagnosed at age 30. I have tried several prescription creams without much success.

For me, this condition has affected far more than my skin. I've struggled with body image and self-esteem for most of my life, and I've spent years working hard to rebuild my confidence and improve my mental health. While I've made progress in many areas, DSAP feels like the one thing I can't seem to make peace with.
Every summer becomes something I dread. My arms and legs flare, and it is frustrated having to dress completely covered all the time.

I know DSAP isn't life-threatening, and I know there are people dealing with much more serious illnesses. But emotionally, this has been one of the hardest things I've faced. It has chipped away at what confidence I had left and made me withdraw from life more than I'd like to admit. I feel like if I didn't have this condition my life would look and be vastly different than what it is today.

I think what I'm really searching for is hope from people who have learned to live with this.
How do you cope emotionally? Have you found acceptance? Are you able to enjoy life, wear what you want, have fulfilling relationships, or has it become easier with time?

I'm not just looking for treatment recommendations. I'm hoping to hear from people who have found a way to carry this without letting it define them.

@mnu730
Hello,
I am an eighty year old woman. My DSAP was also diagnosed when I was thirty with one spot noted by my FP on my abdomen when in for a prenatal visit. I now have lesions on my legs, feet, arms, back, chest , ear lobes and most recently on my face ( thankfully less apparent) occurring in that order).
Like you, I have not found anything that “works “ & have tried several treatment modalities including, blue light therapy, cryotherapy, laser and every new treatment , such as the 2% lovastatin with cholesterol.
In order to continue swimming during the summer I now use long swim pants and long sleeve tops that are certified UPF 50+ sun protective. They come in a really great variety of patterns and colours. . I have swim pants from SOLBARI (Australian) and Nike. Most of my tops are from Lands End. Amazon also has a wide selection. I wear these at the beach and in hotel swimming pools and hot tubs.
I also have several lovely long flowing dresses.
I am a certified cognitive behavioural therapist. I believe that your biggest challenge to finding some peace of mind lies in challenging your negative thinking (understandable) about the DSAP. Ideally moving from the negative thoughts to what’s called “radical acceptance”…this doesn’t mean that you like what has happened to you, but you ACCEPT it so that you can once again get some joy in life. Once I ACCEPTED that to date there is no cure I could put my energy into MANAGING it. I have had a very successful career and personal life. Don’t underestimate yourself! You have the power to make it happen!
I would suggest seeing a qualified cognitive behavioural therapist, ideally a PhD clinical psychologist. Cognitive Behavioural Therapy is research based and effective .It isn’t magic but is very effective if you stay committed & consistent in your therapy.
One of the well known therapists is Christine Padesky. She has a book available titled MIND OVER MOOD which is available through AMAZON. There is also a lot of articles on line re Cognitive Behavioural Therapy (CBT).
Personally I have adapted two mantras which help me:
A general one for managing stressful life situations which invariably arise:
“Don’t fret! Manage it!” (ie. do something about it)
Re these extremely unattractive red scaly spots (barely any area not affected now) on my my arms and legs:
“Just be glad that you have arms and legs to get spots on”
You can generate your own that resonate for you.
Hoping some of this is of value to you.
All the best,
Sheila

@mnu730
I hear you and completely validate your feelings about this. I'm 49 yrs old and was just diagnosed this year although I think I knew something was off as I had scaly patches appearing around age 43 that weren't discolored but definitely not "normal" skin. I don't have the answer for how to carry this yet, as I'm still getting my bearings. I'm currently on day 82 of the Lovastatin/Cholesterol regimen. I've noticed that it does improve my lesions and removes some of them. I have a variety of types - probably just different stages or presentations. Did you try this cream? Although the trial periods were for 12 weeks, my derm suggested that some patients of hers that continue using it frequently see 90-100% clearance from a longer cycle. Because each skin cycle is regenerating properly when the pathway is corrected by the statin, the skin needs many cycles to push the dead disordered keratinization off the top layers of skin. This takes much longer on legs because that skin regenerates at around 40 days vs 25-28 for arms. (I realize you didn't ask about treatment options, but I'm very curious about people's individual experiences with the lovastatin cream)
As far as your question regarding mental state and coping emotionally, I find I feel best when i focus on what I'm grateful for. I definitely think it's normal to grieve our skin and lives before worrying about spots and UV levels. It's also a shock to anyone to hear that you have a "rare" mutation in your body. I find this diagnosis to be "stifling" and it feels like a loss of freedom until you get your mind around it (i have good days and bad days). My current mantra is "Win the Day" meaning I need to focus particularly on things that create a good day for me and not the spots. If that means covering up and not looking at them that day, then so be it. Also, I have found that preparing a wardrobe that fits the season but makes you feel good and like yourself helps a lot. It's July and the summer struggle is REAL. Even as my spots fade, I'm so fair that I don't really want to expose my skin in the sun (for fear of UV exposure). I used to enjoy getting some color and being on the beach all carefree and whatnot. I loved the lounge chairs by the pool. I think the key is to find out how to do the things you love in a different way. I really like what midtown nana said - radical acceptance. I'm not there yet, but once again I've been dealing with this for 3 months, not 30 years. I do think trying to love your body for what it can do regardless of how it looks is something that I strive for. Also, look up Palvella Pharma - they are working on a new drug specifically for DSAP. See announcement here...https://ir.palvellatx.com/news-releases/news-release-details/palvella-therapeutics-announces-new-qtorintm-product-candidate.
I do think this is a mental game in the end - meaning we choose our thoughts about it and we can choose to focus on it or something else. Our thoughts create our emotions at times and it's exhausting for things not to be EASY but I guess everyone has a struggle and luckily for us this is primarily an aesthetic challenge. I'm happy to converse about this at any time if you need moral support.
Best,
Sarah

@ddb77 Thank you so much for taking the time to respond. I actually just filled my prescription for the 2% lovastatin/cholesterol cream, so I'm hopeful it might give me some relief. After living with this for over 10 years, my arms and legs feel very noticeable to me, so even a partial improvement would mean a lot.
This is honestly the first place I've found where other people truly understand what living with DSAP is like. I really appreciate your kindness. Posting here was outside my comfort zone, but I reached a point where I just needed to hear from people who "get it."
I also wanted to say that I do believe in therapy, and I've spent years doing that work. It's helped me heal in many areas of my life and has changed me in ways I'm grateful for. That's actually why this feels so difficult this is one area where I still don't know how to make peace with it.
I know that radical acceptance is the path forward. It’s what Byron Katie says, "loving what is," and I understand the wisdom in it. I just don't know if I'm there yet. Living with this for so long has changed how I move through the world in ways that are hard to explain, and right now it just feels heavy.
Thank you again for sharing your experience. It genuinely helped to feel less alone.

@mnu730 That's great news that you are going to try the cream. Now let me say that it's SLOW to start. Are you supposed to use it twice a day according to your derm? Just don't get down if you feel like nothing is happening, it took 6-8 weeks for me to see a real difference because skin is just slow like that. Especially as we age. So give it a good honest shot. And take photos every two weeks or every four weeks. i think a lot of people get down on the cream because they expect it to work overnight but that just isn't the way it works. The study was 12 weeks and everyone responded at different rates with average clearance of 50%. I think it depends on how many lesions you have, how old are they, etc. I'm going to continue using it nightly after the 12 weeks because I want to see what it will do over six months. If you'd like to chat more just to have a comrade with DSAP, feel free to DM me. I think you can do that if you click on my name.
Best to you!
Sarah

@rmtumlinson Hi I am new here and I cannot DM yet. I'm curious—did this treatment clear up enough that you can wear short sleeves and show your skin?
Mine are very noticeable on my arms and legs, and I have to cover up anytime I'm out in public. I've had this for 10+ years. I currently have the lovastatin cream on order from my dermatologist and am hoping for some relief or clearing. He froze off a few, which was successful, but I have way too many for that to be a practical treatment. This is the first post I've seen where something has worked so well!
Any updates or advice would be greatly appreciated. Thanks!