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Conditions

Disseminated Superficial Actinic Porokeratosis

DSAP on legs

Disseminated superficial actinic porokeratosis (DSAP) is a rare inherited skin condition that causes dry, itchy lesions on the arms and legs. However, some people can develop DSAP as a result of immunity problems. It usually affects fair skinned people over the age of 35, and it is more common in women than in men. About half of the children of those with DSAP will have the condition, but accumulated sun exposure is needed to bring this tendency out.

The lesions usually begin as a small brownish-red spot which can expand to a diameter of 10mm. No sweating occurs in these lesions, but exposure to the sun can cause these to itch. DSAP usually affects the lower arms and legs, but in rare cases it can also affect the forehead and cheeks.

The best way to stop the lesions from growing is to avoid exposure to the sun. This is especially important as whilst development of skin cancer in people with DSAP is uncommon, many patients with the condition have already experienced a significant exposure to the sun so it is important to have yearly check-ups on the lesions.

Unfortunately treatment of DSAP does not usually improve the condition dramatically. Creams can offer some slight help with cryotherapy also often being prescribed. Cyrotherapy is when the lesions are removed by freezing them using liquid nitrogen, but this can sometimes lead to areas of hypo-pigmentation. Other treatments include ointments and oral medicines.. However, some people can develop DSAP as a result of immunity problems. It usually affects fair skinned people over the age of 35, and it is more common in women than in men. About half of the children of those with DSAP will have the condition, but accumulated sun exposure is needed to bring this tendency out.

The lesions usually begin as a small brownish-red spot which can expand to a diameter of 10mm. No sweating occurs in these lesions, but exposure to the sun can cause these to itch. DSAP usually affects the lower arms and legs, but in rare cases it can also affect the forehead and cheeks.

The best way to stop the lesions from growing is to avoid exposure to the sun. This is especially important as whilst development of skin cancer in people with DSAP is uncommon, many patients with the condition have already experienced a significant exposure to the sun so it is important to have yearly check-ups on the lesions.

Unfortunately treatment of DSAP does not usually improve the condition dramatically. Creams can offer some slight help with cryotherapy also often being prescribed. Cyrotherapy is when the lesions are removed by freezing them using liquid nitrogen, but this can sometimes lead to areas of hypo-pigmentation. Other treatments include ointments and oral medicines.

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My DSAP was exacerbated by the use of certain sun screens (Bullfrog; Coppertone). I began using my wife's skin lotion and saw immediate improvement. (about 75% reduction in redness, etc.) The lotion used is Johnson's Natural baby lotion. The lotion is 99% natural and is applied daily after showering and prior to sun screen application. It is reapplied before bed time. I'm cautiously optimistic and thrilled.





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I have just finished my last treatment on my arms. A combination of freezing and laser. I am thrilled. Insurance pays for freezing, laser not paid for so depending on how much you need done but my physician is the best in the world and the nicest person. If you want the practice information let me know but he is in Boston and if your not close to this area I will bet he will consult with your physician. There is a ton of hope.





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My mother and I both have DSAP. Mother's spots became red and even bloody. She started putting aloe on her legs every night and noticed a difference within days.Aloe, the real thing, works best but we also use aloe gel from a bottle.





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I have had DSAP for over 30 years (I am now 53) although nobody knew what is was for the longest time. I have a great dermatologist whom I see once a year. No treatment has helped me ever. I tried Effudex cream which BURNED my skin and made no difference in lesions. I am a runner and love to be outside as much as possible in nice weather. Sunscreens have NOT helped me at all and I have been read that they block the body from making vitamin D which is an essential vitamin. My doctor is amazed at my high level of vitamin D (a very good thing!) so I continue to NOT wear sunscreen. Yes, the lesions are ugly and get more red when by body is hot and look more whitish/scaly otherwise. I have come to terms with it. i go sleeveless if I want to and wear shorts in the summer. If people can't get beyond my lack of perfection, that is their problem...not mine. I do get tired of explaining to "curious people" though that this is not something they can catch from me - it is a rare hereditary disease.





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I've had these spots for years. This past winter I started taking Epsom salt baths for aches and pains. Bonus, the spots look about 75% better.





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i am an irish girl living in the US, i was diagnosed about 6 years ago, totally devastated me. i had never heard of it and have since found out my dad had it and my brother/cousin too. This is what i do to keep mine under control. as soon as spring shows up i HAVE to wear spf15, even if i run errands without it i break out so as soon as the weather gets warmer im very cautious. i also apply Aveeno moisturizer daily, it really helps. I have the very best dermatologist who is very understanding, if i get a break out she prescribes "Triamcinolone Acetonide Cream, USP 0.1%",it helps calm it, when i go to her in the winter she is amazed how clear my skin is, so i think i must be doing something right. Summer is a lot different, the backs of my legs get pretty bad but the maxi skirt has been my savior. i am very conscious of my arms so please as soon as the weather gets nice, protect them. We have no choice but to live with this awful condition, i pray for a cure but until then use SPF!





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(CHLORINATED POOL WATER) I am fair skinned, female, and in my 40's. DSAP runs in my family. I have it on the tops of my arms and lower front legs. It does not itch. My dermatologist said there is no cure for DSAP and that expensive creams and technology do not work...However, I found something that worked for me. CHLORINATED POOL WATER! Yes CHLORINATED POOL WATER! Discovered this a couple of summers ago by accident. I get in the pool at least 3 or 4 times a week for an hour on longer. I use a loofah in the shower with mild soap (no harsh deodorant soaps or soaps with heavy fragrance)and then moisturize well with a non irritating oil or moisturizer like baby oil with Shea butter or pure coconut oil. It took about a week before I saw results. I hope this will work as well for you as it did me. Best Wishes!





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I have suffered for about 30 years with this condition & learned to live with it by covering up in the summer. I feel very envious of the women that do not have this condition. I feel very sorry for my daughter that has the condition & she is feeling very depressed with the condition & wish I could come up with the golden answers for her.I would like to know if laser treatment would help even though the cost is very expensive?





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I am 65 years old and was first diagnosed with DSAP in my late 20's. My Mother and brother both have the same condition. I try to cover up when I'm out in the sun but am totally miserable because I live in the desert and it's HOT and windy. I've tried freezing and creams but nothing is effective. The spots are ugly and people are afraid of me. Once before surgery the surgeon made me test for MRSA. My dermatologist verified my condition so I was allowed to proceed. Surely with all of the technology we have available to us there should be some help for DSAP patients

I am 61 yrs old and found my first lesion on my inner thigh when I was 34 yrs old. When it did not go away within a year I showed it to my dr. He had never seen it before, but as there was little change, told me to keep an eye on it. I did not find out until 10 yrs later that my mother also had the same condition that was never diagnosed. I went to a dermatologist when I was 46 who immediately diagnosed DSAP. He told me that it was hereditary, and finding that I had been raised in southeastern Alaska with 300 days of rain per year, said that mine was probably not brought on by exposure to the sun. He said there was no cure, but prescribed Efudex. At $200 per tube, I paid out of pocket for 3 before I gave up. It was impossible to put it on 4x per day and to cover my lower legs and arms where the disease had spread radically. I was told to limit time in the sun, but the point was not stressed to stay out of the sun completely. The rate of spreading appears to be the same whether in or out of the sun for me and it now covers my upper arms and lower thighs, as well. I found out about 8 years ago that my older sister also has the disease. She had laser treatment of some sort about 8 yrs ago with good results in that the lesions lost their dark and red appearance and are now lighter, but she still has the lesions. I have been completely covered with clothes from head to foot for over 6 years now, but there is no change in my lesions. My mother's are very dark and large and has them on all of her extremities. She is 87. I have always been extremely healthy, but as the years have progressed I have found that my immune system has become very sluggish. I believed this was an aging norm, but I no longer believe that. As the skin is the #1 organ for immunity, it only makes sense that the large area of skin affected with lesions, would have an impact on the immune system. Doctors do not agree with me, but then very few of them have any knowledge of the disease. I have been blessed with very young looking skin, little sagging and few wrinkles where the disease does not exist, but it now covers at least 50% of my body. I am grateful that it does not appear on my face, neck, hands, shoulders or feet - the only skin that is ever exposed. I have recently started a correspondence with a male childhood sweetheart, and am fortunate that we live a great distance apart. At some point he will want us to meet and I am not prepared for him to see what my body looks like now. Aging is one thing, but this disease is disfiguring. I have a 30 yr old daughter that I have warned about the genetic condition to this disease, but she is still in her two-pc swimsuit all summer. She has a 4 yr old daughter who also loves the sun. They both wear high SPF sunblock believing that is all it takes, but in my experience that makes absolutely no difference! I have no advice for others with this disease. Because I am older, many younger people think I have liver spots (a lot of them), when I actually have very few, and this from seeing them on the rare occasion that I wear a 3/4 length sleeve. I just have the need to share . . .





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I'm 49 years and have had this condition for several years. I first noticed a mark on the side of my leg at about 28. I'm very very fair...redhead and blue eyes. I love the outdoors and wish I had known what I now know today. I have my upper and lower legs with many, many spots. In the past two years its now to my lower arms making wearing short sleeves uncomfortable due to the unsightly red spots. I've not been in the sun but have new spots appearing now on my upper arms and hands. Part of the fear I face is not knowing where I will get more spots.I'm certain others fear this too. I also believe this is affected by our immune systems. I was diagnosed with microscopic colitis two years ago and its an auto immune disorder. This DSAP issue has really become worse since this diagnosis. Even though I live a gluten free lifestyle, I still feel as if my immune system is still struggling.I also feel there are no drs. That understand this skin disease and I've had such a bad experience with my current dermatologist that I must find a good one that can work with me on this disease. It is a devastating condition and limits my social life greatly. I'm also single and wanting to date with hopes of marriage. With this disease its difficult... But it is true that beauty is only skin deep. Lots more beauty on the inside.

My case sounds very similar to yours. I'm 57 with a great complexion, but hundreds of spots on my legs, and a few elsewhere. I always wear pants... these are not from sun exposure. I've heard that gluten free can help, and wonder about ways to boost overall immune system. I'm trying probiotics, low grain, non-gmo diet, cod liver oil supplements; and wearing makeup! Good luck to you!

Does anyone know of any research being undertaken into causes and cures for dsap, or whether there are any clinical trials underway anywhere? And, does anyone know whether blood-thinners such as warfarin make dsap worse, or more pronounced?





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Research in China has been underway for several years attempting to investigate the molecular cause, so far they have targeted a specific gene, MVK. The most recent article was published in Jan 2014.

Thanks. Where could I read this article?

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