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Thread: research?

  1. #1
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    I was just wondering if there was any new research done on SD or rosacea? It seems like there's a lot of research on psoriasis and atopic dermatitis, but not that much on SD or rosacea.I'm just astonished about what science can do these days, but they can't figure out what's causing our problem. I just want to have a glimpse of hope. I Can't imagine waking up everyday like this. Do you think there will be a cure for rosacea in the next 5 to 10 years?

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    The thing is there are so many different causes to rosacea. Different diseases that share more or less the same symptoms : redness, bumps (or not), flushing (or not). I believe that my type 1 rosacea is not the same disease as P&P rosacea without flushing, for instance. So, what is really rosacea ? Can there be A cure to rosacea? I don't think there is one single answer but many different ones and that is most likely why it's been so difficult to figure it out.

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    Hi Samar, I had the same question two years ago, and did a lot of google-searching for research on seb derm. Then I tested all the products on myself. There actually is a lot of useful research but the research is often disconnected by long gaps of time passing. Google searching, even by non-medical people like me, found useful research that needed to be pieced together.

    Here are some guidelines that may be helpful.

    First, search with the medical term, like telangiectasias instead of spider veins, or malassezia instead of seb derm. This however illuminates the initial problem -- you have to learn a lot of medical terms. I floundered for the first two months, learning medical terms. For example pruritis means itchy skin. If you don't use the medical term, you simply find a lot of lamentations by regular people, which wastes time.

    Second, look "around the problem" instead of directly at it. For example, malassezia metabolizes oil -- what kind of oil? A 1976 research article from the UK stated C12 to C22 oils. What kind of oil is C8 and C10? It didn't exist in 1976, but in about 2005, C8/C10 oil became commercially available as MCT oil, due to a new distillation process. Where is it sold? Hi-Health. This little summary started with my google-searching for "medium chain triglyceride oil," an extremely vague term, but after about 200 hours of searching, I found some useful information. Enormous amounts of time are necessary.

    Third, participate in this forum. My curiosity, about oils and their carbon chain lengths, was ignited by someone on this forum who wrote that coconut oil was a medium chain triglyceride oil -- this is both true and false, as it turns out, but before I completed all my google-research, I didn't know about carbon chain lengths, and how that mattered to seb derm. I'm certain that the C8/10 oils were known as a relevant factor to seb derm, to a few medical researchers, but no one had published anything about it since 1976 -- nobody, which is weird but true as far as I can tell.

    I'm sure there are similar disconnections for rosacea research. For example, what is glycation and does it matter to rosacea? Follow your intuition by reading research articles. Don't rely on Abstracts.

    Fourth, Reviews can be helpful for ideas, but medical Reviews tend to list all the possible treatments, without any ranking as to what's best. That's useless, so you'll have to test the products on yourself. Another similar problem is that head-to-head tests are rare because researchers don't want to make enemies or appear to be playing favorites. And some research is sponsored by companies that skew the results by excluding people -- for example the Mirvaso trials excluded severe flushing people, so the results were meaningless and bad.

    Fifth, a normal google-search will click through 10 to 20 google-result pages. Each page has 10 results, so look at 100 to 200 results. I like to decide in advance when a particular research idea is "done" so I can move on to another idea. Write down everything you discover, with links and titles, to organize your ideas. You will eventually have a Review

    Finally, simple ideas are worth following, even if no one else agrees (yet). If there's serious medical research for any theory, try it see if and how it works, even if it seems odd at first.

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    Quote Originally Posted by Souris24 View Post
    The thing is there are so many different causes to rosacea. Different diseases that share more or less the same symptoms : redness, bumps (or not), flushing (or not). I believe that my type 1 rosacea is not the same disease as P&P rosacea without flushing, for instance. So, what is really rosacea ? Can there be A cure to rosacea? I don't think there is one single answer but many different ones and that is most likely why it's been so difficult to figure it out.
    That's exactly what I was thinking. I have SD, I haven't been diagnosed with rosacea yet (dermatologist wasn't sure, in 6 months she would take a look again to see if it is, pfff) . That's when I decided to join this supportgroup and figure things out for myself (well with the help of fellow sufferers). Anyway, in my case I think it's hormonal and stress (which has an effect on hormones).
    I also know that thyroid problems is another cause. A few weeks ago I saw a girl that I knew from years ago, she used to have nice skin. Now her skin was bloodred and she had p&p. I immediately knew she had rosacea, probably because now I pay more attention to people's skin. I found out she just had her thyroid removed because of thyroid problems. Pretty obvious her rosacea was related to her thyroid disease. Would it not be wise if they would look at people's medical history instead of putting them in different groups or types just by looking at their skin? Till now, the only thing they've achieved is to cover up the symptoms a little bit.

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    Quote Originally Posted by Tom Busby View Post
    Hi Samar, I had the same question two years ago, and did a lot of google-searching for research on seb derm. Then I tested all the products on myself. There actually is a lot of useful research but the research is often disconnected by long gaps of time passing. Google searching, even by non-medical people like me, found useful research that needed to be pieced together.

    Here are some guidelines that may be helpful.

    First, search with the medical term, like telangiectasias instead of spider veins, or malassezia instead of seb derm. This however illuminates the initial problem -- you have to learn a lot of medical terms. I floundered for the first two months, learning medical terms. For example pruritis means itchy skin. If you don't use the medical term, you simply find a lot of lamentations by regular people, which wastes time.

    Second, look "around the problem" instead of directly at it. For example, malassezia metabolizes oil -- what kind of oil? A 1976 research article from the UK stated C12 to C22 oils. What kind of oil is C8 and C10? It didn't exist in 1976, but in about 2005, C8/C10 oil became commercially available as MCT oil, due to a new distillation process. Where is it sold? Hi-Health. This little summary started with my google-searching for "medium chain triglyceride oil," an extremely vague term, but after about 200 hours of searching, I found some useful information. Enormous amounts of time are necessary.

    Third, participate in this forum. My curiosity, about oils and their carbon chain lengths, was ignited by someone on this forum who wrote that coconut oil was a medium chain triglyceride oil -- this is both true and false, as it turns out, but before I completed all my google-research, I didn't know about carbon chain lengths, and how that mattered to seb derm. I'm certain that the C8/10 oils were known as a relevant factor to seb derm, to a few medical researchers, but no one had published anything about it since 1976 -- nobody, which is weird but true as far as I can tell.

    I'm sure there are similar disconnections for rosacea research. For example, what is glycation and does it matter to rosacea? Follow your intuition by reading research articles. Don't rely on Abstracts.

    Fourth, Reviews can be helpful for ideas, but medical Reviews tend to list all the possible treatments, without any ranking as to what's best. That's useless, so you'll have to test the products on yourself. Another similar problem is that head-to-head tests are rare because researchers don't want to make enemies or appear to be playing favorites. And some research is sponsored by companies that skew the results by excluding people -- for example the Mirvaso trials excluded severe flushing people, so the results were meaningless and bad.

    Fifth, a normal google-search will click through 10 to 20 google-result pages. Each page has 10 results, so look at 100 to 200 results. I like to decide in advance when a particular research idea is "done" so I can move on to another idea. Write down everything you discover, with links and titles, to organize your ideas. You will eventually have a Review

    Finally, simple ideas are worth following, even if no one else agrees (yet). If there's serious medical research for any theory, try it see if and how it works, even if it seems odd at first.
    Thank you Busby, your information is very helpful. You should become a dermatologist or doctor and find us a cure (I've read your posts and learned more from it then from my derm). I'm one of those people who are sad, then mad then take action. That's why I decided to do some research on rosacea and SD. I know that I'm annoyed by the word rosacea since everybody has different symptoms and causes. I guess derms use rosacea for ' I don't know what it is so I call it rosacea'.
    It would be nice if all of us could figure it out. All we have are some creams or pills to treat the symptoms but not kill the cause.

  6. #6
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    Thanks for your compliments. I can't test on myself for rosacea treatments, but from what I've read, you might visualize a bacterial biofilm located in the sweat glands, and research that as a rough beginning point. I say this because some people say that they don't sweat on their face, and others have some relief by taking sub-microbial (40mg) doses of doxycycline. Sweat contains antimicrobial peptides (actually the term is host-defense peptides) that would cause bumps and redness when retained under the stratum corneum. You could imitate the sub-microbial dose with Bactroban or Fucidin creams. Just some ideas. I don't know if there is any research to support the theory. You'll have to look for it.

    Try to find an OTC topical treatment. I always started from the point of view that I did not want a prescription because doctors are difficult to deal with -- I'm a lawyer, and I recognize that docs are generally brilliant people, but they were not able to diagnose or treat my condition, so I completely abandoned the belief that docs would ever be part of the solution.

    Also I don't like the idea of pills because of the problem with side effects.

    Good luck!

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    Quote Originally Posted by Tom Busby View Post
    Thanks for your compliments. I can't test on myself for rosacea treatments, but from what I've read, you might visualize a bacterial biofilm located in the sweat glands, and research that as a rough beginning point. I say this because some people say that they don't sweat on their face, and others have some relief by taking sub-microbial (40mg) doses of doxycycline. Sweat contains antimicrobial peptides (actually the term is host-defense peptides) that would cause bumps and redness when retained under the stratum corneum. You could imitate the sub-microbial dose with Bactroban or Fucidin creams. Just some ideas. I don't know if there is any research to support the theory. You'll have to look for it.

    Try to find an OTC topical treatment. I always started from the point of view that I did not want a prescription because doctors are difficult to deal with -- I'm a lawyer, and I recognize that docs are generally brilliant people, but they were not able to diagnose or treat my condition, so I completely abandoned the belief that docs would ever be part of the solution.

    Also I don't like the idea of pills because of the problem with side effects.

    Good luck!
    Thx Tom busby for the advice . Funny, I also don't relay on derms advice anymore, they haven't helped me at all. I think most of us think that way.

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