@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