Help find a cure! Take our survey

Our mission at the DSAP Institute is to reach as many people with DSAP as possible to gather information and statistics  so that the medical community can start searching for a cure.

Your information will be anonymous and confidential.

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21 comments on “Help find a cure! Take our survey

  1. I was 29 when my DSAP spots started appearing. I am 65 years old now. I have been overwhelmed by the impact DSAP has had on my lifestyle for a variety of reasons.
    I am happy to have “stumbled” on this website today because I have never met or spoken to any other person with DSAP.

    • Thanks Jo! Very soon we will be opening up a forum as part of the DSAP Institute so everything can be under one roof. The goal is to reach absolutely as many people as possible with this condition and with one central hub we will gain a lot more attention. It’s all in the works!

      And if anyone has any topics they would like to see on the blog, please let me know, and I’d love to have guest bloggers as well.

  2. I’m excited about the ebook and the support from this site! I appreciate knowing others are out there struggling with this disease. I was around 30 years old when I noticed a few spots and now I have many more and can see new ones every year…scary thought. I am 45 now and just hoping there might be a cure before they get worse.

  3. Hi Lorna nice work, I’m in Hamilton nz and feel pretty alone with this…used to have beautiful skin. After my fist baby at aged 26 the dsap started to show…look forward to getting some answers.
    Rachel

  4. Hi there,
    I am so happy to have found this website. I have felt so alone for so long and wondered why I have these ‘horrible spots’ which I developed at the same time as the autoimmune disease I have called Hashimoto’s Thyroiditis. My father, brother and aunts and uncles have DSAP too but none of them got it until in their 50’s at the earliest. I was only 36 when mine began to appear. Whilst I wouldn’t wish DSAP on anyone, it is really nice to know that I am not alone. No one in the family has known a name for the condition until I researched to see if I could find it and we now know what it’s called. No Doctors that I have seen here know about DSAP (until I told them and they agree that it looks exactly like what I have). I have recently tried a bronzer that comes from New Zealand (I live in Australia) called THIN LIZZIE and found it to be the best as a leg makeup to cover and blend and make my legs look quite tan and ‘normal’, so I highly recommend that to people. I have tried many, many products both to try to help the spots as well as to cover them and am about to trial a Nucerity product called Skincerity on my spots so will let you know if I have any success.

    Thanks, Paula

  5. Well hello there everyone,

    I first saw my spots when I was 17. My mother is norwegian, but it is my dad who is canadian who had dsap too. I am fair skinned and female and lived in Miami for 12 years..so you can imagine the state of my skin now. I was diagnosed quite a while ago, in 1990, and am lucky to have OHIP under which medical treatments are free for any “keratoses”.

    I have tried the ointments but they made the spots worse and this lasted for a year. I have been living in Canada for 8 years where we cover up a lot and this has probably helped. Summer is upon us and no I do not wear short sleeves. For example I have a gala to go to tomorrow and will have to wear a chic blazer over my long sleeveless dress.

    I have explained my spots to those who love me, my kids and friends as “leopard spots”: it helps to associate beautiful sleek and rare animals with it.

    I have only a few on my face but they are unnoticeable and I hope this will continue. My chest, back shoulders, forearms and bottom legs are bad. Freezing has been the only way for me, but it is painful when you do 20 at a time and I have so many.. i have only done this twice. It has worked though completely. the spot blisters, scabs and falls. the result is a white patch of skin. Honestly I have had visions of freezing or peeling the entire top of my arms, but given the pain of just a few dots..

    If anyone needs fashion advice..I promise there are ways to look really good. It also helps that mad men, victoria beckham and taylor swift, have brought the 50s back: long pencilskirts, long sleeved shirts with high collars.. there are ways ladies.

    I had never thought of the sandpaper and will go to home depot tomorrow 😉

    I have shaved my arms hoping the shaver would help smooth things, but instead it aggravated my spots.

    I find that blood thinners like aspirin, as well as red wine or alcohol really…make it worse. Hot weather, hot baths..avoid.

    I will start looking into ayurvedic diets too in order to calm the inflammation (cucumbers anyone?).

    Hats can be chic and a trademark too: fedoras especially. Pair that with a blazer and cool t-shirt, boyfriend jeans and flats..and you may be on to something.

    As far as my boyfriend..he likes touching the inside of my wrist and calls it the softest place with marvel in his voice. Because it is. Ahem.

    I wish you all the best,

    m

  6. Love this site!

    Developed severe vitamin D deficiency around age 40. which caused kidney and parathyroid problems and swelling in legs. I am female, now mid 40’s. DSAP appeared on my arms and legs around the same time. Mother has it and also a vitamin D deficiency. Great Grandmother had it. Doctor still suspects I may have an autoimmune disorder as well, but have not been tested. I am not on any special diet although milk seems to aggravate my dermatitis unrelated to DSAP.

    Many say the lesions itch. Mine don’t really itch unless I have used a product that has irritated them. I don’t used heavily perfumed products…only Dial soap and sometimes Shea butter moisturizer.

    Dermatologist explained all the treatments that are available for DSAP at this time do not work and only scar the skin. There is no cure.

    The only thing I have found that helps is chlorinated water (pool water) and to stay out of sun or heat.

    The lesions tend to dry out in winter and blend in with the fair skin tone, but using DHA (self tanner) really makes them show up…I have had as many as 40 on each lower leg. The sun and/or heat make them turn red.

    I am of Irish descent

  7. i am an 62 year old male (SINGLE) live in perth western australia . i am a fencing contractor and i have worked in the sun for about 40 or more years . i found out that i had dsap in my early 50,s i have not tried any creams as thats just a waste of money i wear long sleeved shirts and long pants to work but short sleeved shirts when going out. the dsap legion is like a weed the more times you pull it out it just grows back, so i believe the legion starts of deep inside the body, i say this because i had a double knee replacement 5 years ago and where the doctor had made the deep long cut into both knees and given 3 litres of blood the legions still have not grown back , so i believe if the researches look deep inside the infected area there just might be a chance of a cure. regards kevin french.

  8. Thank you all for the information you have shared. I am also a DSAP recipient of a gene or auto immune disease or Hashimotos thyroiditis which could be the cause. I am now having many tests with my endocrinologist who believes Hashimoto may be the underlying cause. I will keep info coming. Geed Luck everyone Veronica

  9. My spots first appears when I was about 50. I am now 75. For years I went to different dermatologists and they diagnosed me with Actinic Keratosis. I even went to grand rounds at NIH in Wash. DC and none of the doctors picked up on it as DSAP. I have been to what I consider the best dermatologists in my area. I finally received a diagnosis of DSAP. I have DSAP on my arms and this year it has gone to the top of my hands. I also have it on my legs from my hips down to the top of my feet. I have been treated with Solaraze Gel, Aldara, Termovate E, Tazorac, Effudex (my very first treatment), Tretinoin, Levelan Kerostick Blue-U Treatment and had a 3 x 3 chemical peel on one leg. None of the above have been effective. I take blood thinner which I read somewhere makes it worse and I have a Protein S Deficiency (don’t know if that matters). I find I have some results using Neutrogena Ultra Sheer Dry-Touch sunscreen SPF 55 or higher and Cerave Moisturizing Lotion which helps the redness. My legs are so bad I don’t even wear capri pants and I never wear a short sleeve top. I feel like I cover up year round. I have felt alone with this DSAP and have looked for studies being done on DSAP. I glad to find this on Facebook.

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