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Research suggests rosacea subtypes may be different conditions

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  • nat007
    replied
    Originally posted by IowaDavid View Post
    Speaking of trees, we need a rosacea Lorax.

    Leave a comment:


  • Starlite
    replied
    Originally posted by IowaDavid View Post
    Speaking of trees, we need a rosacea Lorax.

    Leave a comment:


  • IowaDavid
    replied
    Originally posted by nat007 View Post
    lol
    nice analogy
    Speaking of trees, we need a rosacea Lorax.

    Leave a comment:


  • nat007
    replied
    Originally posted by MasK View Post
    This study makes me think about the council of the Ents (the talking trees) in the "Lord of the Rings".
    They take like forever to finally agree that the two hobbits are not two orcs, while there is a huge war needing them to fight.

    I hope you see where I wanna go with that.
    lol
    nice analogy

    Leave a comment:


  • MasK
    replied
    This study makes me think about the council of the Ents (the talking trees) in the "Lord of the Rings".
    They take like forever to finally agree that the two hobbits are not two orcs, while there is a huge war needing them to fight.

    I hope you see where I wanna go with that.

    Leave a comment:


  • Starlite
    replied
    Originally posted by nat007 View Post
    After the news broke that the demodex mite is in fact linked to rosacea and is more abundant in rosacea skin, recently, I asked my own specialized derm about it and he has been dealing with rosacea for the past 35 years and said that some subtypes are, the papular subtypes to be precize, but mine isn't in his opinion. I have always believed that my vascular subtype has set off as an auto immune problem and both my derms believe this too. Bowel problems and other inflammatory conditions (I have several) might stir up the fire or be the engine, I am not sure but I am pretty convinced that an auto immune reaction is at the core of it all in the vascular subtype, whereas the papular subtype might have completely different causes and treatments therefore.. It's a shame that the majority of dermatologists that I have seen and that I hear of automatically throw antibiotics and metrogel at you and even when you say it makes matters worse they encourage to keep trying it, cause it is listed as 'the' rosacea treatment.
    Just insanity, isn't it? I also have several "inflammatory" conditions. I believe they all must have a common source. We will find the answers. I know it.

    Leave a comment:


  • nat007
    replied
    After the news broke that the demodex mite is in fact linked to rosacea and is more abundant in rosacea skin, recently, I asked my own specialized derm about it and he has been dealing with rosacea for the past 35 years and said that some subtypes are, the papular subtypes to be precize, but mine isn't in his opinion. I have always believed that my vascular subtype has set off as an auto immune problem and both my derms believe this too. Bowel problems and other inflammatory conditions (I have several) might stir up the fire or be the engine, I am not sure but I am pretty convinced that an auto immune reaction is at the core of it all in the vascular subtype, whereas the papular subtype might have completely different causes and treatments therefore.. It's a shame that the majority of dermatologists that I have seen and that I hear of automatically throw antibiotics and metrogel at you and even when you say it makes matters worse they encourage to keep trying it, cause it is listed as 'the' rosacea treatment.

    Leave a comment:


  • Starlite
    replied
    Well you all give me hope and courage. A breath of fresh air I tell ya. Thank you

    Leave a comment:


  • johnabetts
    replied
    Originally posted by Mistica View Post
    Little interest has been shown within the pharmaceutical industry.
    Just the problem I have with my current development work. I am carrying out my own research into various dermatological products but it is next to impossible for the pharma giants to become interested. Is it because they cannot see gazillions of $$$$, £££, €€€ or whatever currency or do they still have the attitudes of the 1980s and the "not invented here" syndrome which was especially prevalent in the USA.

    Leave a comment:


  • Mistica
    replied
    In continuation with the theme of this thread...'getting physicians to wake up to new ideas', take a look at the following article by Dr Borody.
    He is my specialist. He is very outspoken and my consultation with him was rather daunting to say the least.

    Here is a quote from an article which gives you some idea of his mindset.



    "It's similar to any new theory or practice when it's introduced - is very hard to get old dogs to learn new tricks. Little interest has been shown within the pharmaceutical industry. Young doctors are very much on board with FMT, it's the old farts who are holding us back".

    *************

    I have numerous health issues and the current goal is to treat me with a FMT. I am an experiment.
    I am currently taking antimicrobials which are poorly absorbed from the gut.

    Incidentally, one of the studies refered to in the article is recruiting now - in Amsterdam.

    Leave a comment:


  • Brady Barrows
    replied
    Originally posted by Starlite View Post
    Not at all Brady... not all bad at all. There are many brilliant, compassionate, and passionate physicians who stick their necks out in spite of the risks to their careers for doing so. In fact I think there are very few "bad" Doctors. The vast majority have good intentions but have been brain washed and bullied and coned. My goal in stirring up the thoughts on our relationships with Doctors is to stop seeing them as someone who knows better then us about our bodies. Almost everyone who has been hurt by a medical error knew something was wrong but over rode their own best interests because the "Doctor said to." We have to think about them differently now. We have to stop believing that we had a good Doc visit if we came away after 15 minutes with a prescription for the latest and greatest drug. WE have to read and study and ask good questions... hard pressing questions. It's us that has to make the medical system change.


    Like you are doing BTW

    And I like what you are saying too. That is why I formed the RRDi. I didn't like the way the NRS runs their organization. I think a non profit should be just that, non profit, that is what the name means. And if enough rosaceans would ban together in the thousands they can give a voice to the medical community. As it stands now, according to the NRS in their Form 990, they have 75,000 supporters. That is why physicians listen to the NRS and parrot their trigger list of avoiding wine and spicy food and 16 million Americans who have rosacea. Powell, in the article mentioned at the beginning of this thread questions the numbers the NRS publishes:

    "Regarding rosacea's prevalence, "It seems to be at least as common as psoriasis," although statistics from different countries vary, Dr. Powell says. "In the United States, for example, the National Rosacea Society produced data suggesting there were 14 million patients. This was based on a survey of individuals who self-reported rosacea." However, he says, this methodology creates problems because many patients with facial redness assume they have rosacea when they might not." [the NRS now says the number is 16 million]

    The trigger list the NRS produces is also based upon 'self-reported' surveys. The RRDi has a long way to go to catch up to the NRS but we don't have paid staff nor paid private contractors. We are all volunteer.

    Leave a comment:


  • Starlite
    replied
    Not at all Brady... not all bad at all. There are many brilliant, compassionate, and passionate physicians who stick their necks out in spite of the risks to their careers for doing so. In fact I think there are very few "bad" Doctors. The vast majority have good intentions but have been brain washed and bullied and coned. My goal in stirring up the thoughts on our relationships with Doctors is to stop seeing them as someone who knows better then us about our bodies. Almost everyone who has been hurt by a medical error knew something was wrong but over rode their own best interests because the "Doctor said to." We have to think about them differently now. We have to stop believing that we had a good Doc visit if we came away after 15 minutes with a prescription for the latest and greatest drug. WE have to read and study and ask good questions... hard pressing questions. It's us that has to make the medical system change.


    Like you are doing BTW

    Leave a comment:


  • Brady Barrows
    replied
    Research suggests rosacea subtypes may be different conditions

    Starlite,
    I understand your point. To some degree you are quite correct With the degree of money involved in the pharmaceutical companies And their influence on physicians And as you mentioned the industrial military complex has great deal of influence on the world However not all physicians are bad as this thread is pointing out. Dr. Powell is pointing out how the subtype classification system is wanting. The original committee that subclassed Rosacea into subtypes admitted that it is based on morphology rather than on nosology. We should appreciate the work of physicians like Dr. Powell. They are not all bad.

    Leave a comment:


  • Starlite
    replied
    You are of course correct Brady, on one level. It takes a great deal of intestinal fortitude to get through medical or nursing school. Just like it does to get through basic training and beyond for the military. However it takes a special kind of strength to say every thing I have believed in and fought so hard for is wrong and I am hurting people so a special few can get rich, I will not go on doing that, and put your guns down. The systems (both medical and military) are set up to drum the kind of people who can do that, or even think like that, right out and early in the process. Did you know that some of the standard medicines used to treat cancer, called chemo therapy, are insecticides from the 50's? How can anyone in good conscience give that to someone?

    Ugh! Anyway.. I could go on and on.. maybe in another thread. Thank you for disagreeing with out being disagreeable. I have other threads of yours I intend to reply yo.. just waiting for the brain power to come back around. LOL

    Leave a comment:


  • Brady Barrows
    replied
    Research suggests rosacea subtypes may be different conditions

    Starlike,
    Getting through medical school and residency is not described by many as weakness since it is an accomplishment not obtained by the faint of heart. Most respect what physicians go through to get M.D. behind their name. Doctors are nevertheless still all too human but the idea of going through all those hoops isn't for sissies.

    Leave a comment:

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