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  • Welcome to the RRDi official web site. Finding the Cure. 

    Where to Begin Your Search

    Suggest you read our FAQs for at least a half hour. After that browse our member forum for another half hour. 
    About Us • What Causes Rosacea? • What Should I Ask My Physician?Rosacea NewbiesFamous Rosaceans •  Contact us

    What is Rosacea?

    Rosacea is a chronic and sometimes progressive disorder of the face, characterized by some or all of the following symptoms:

    Extremely sensitive facial skin with blushing, flushing, permanent redness, burning, stinging, swelling, papules, pustules, broken red capillary veins, red gritty eyes (which can lead to visual disturbances) and in more advanced cases, a disfiguring bulbous nose. Men and women of all ages can be affected, with over 75 million estimated Rosacea Sufferers worldwide

    "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." Zoe Diana Draelos, MD. Dr. Draelos is a member of the ROSIE [ROSacea International Expert] Group that says the subtype classification of rosacea is controversial. Dr. Draelos is also a member of the RRDi MAC. Just because you have a red face might mean you have another skin condition besides or with rosacea, since other skin conditions may co-exist with rosaceamimic rosacea or may be a rosacea variant

    "Rosacea is a multifactorial, hyper-reactivity, vascular and neural based disease with a broad range of facial manifestations where normal vasodilation is greater and more persistent and involves an autoimmune component of microscopic amounts of extravasated plasma induce localized dermal inflammation that may induce repeated external triggers, vasodilation, telangiectasias, redness with eventual fibrosis and hypertrophic scarring of the dermis." Sandra Cremers, M.D., F.A.C.S., RRDi MAC Member.

    Phenotypes

    In November 2016, the RRDi endorsed the phenotype classification of rosacea which was announced by the ROSCO panel as a better approach of diagnosising rosacea than subtypes.

    Rosacea Differentiation and Misdiagnosis

    Your physician should differentiate rosacea from a plethora of other skin conditions. If you need photos of rosacea click here.

    Sometimes rosacea is misdiagnosed. No one really knows what causes rosacea and there are a number of theories for your consideration. Our latest article on this subject, Rosacea Theories Revisited is worth your time to consider. 

    What will the RRDi Do For Me?

    You can view the list of prescription treatments prescribed for rosacea. There is a list of non prescription treatments for rosacea to consider. We have an affiliate store dedicated to rosacea books, treatments and odd and ends. You can browse our public member forum and learn about rosacea. The digital medical revolution can assist you in your search for a treatment to improve your condition. Your rosacea is an individual case and you need to find what treatment will work for your rosacea and not a treatment aimed at the masses. Individuals can come together and share data, using collaboration tools that the RRDi offers for free. If you have the volunteer spirit and want to become part of this innovative non profit, learn how you can volunteer and be part of this digital medical revolution. You can post in our member forum if you join and register simply with an email address. If you have concerns regarding your privacy, please consider this post.

    Once you join you have a number of tools to collaborate with other members. You can create your own rosacea blog, with easy step by step directions on how to do this. Our Gallery application lets members share photos and videos with the community. Volunteers who contribute their time and energy may receive a free G Suite account through a generous contribution of Google, one of our sponsors.  

    You may receive a free ebook, Rosacea 101: Includes the Rosacea Diet as a gift from the founder/director if you mention in your registration application that you want the free ebook (write in the volunteer box you want the free ebook).

    Our 2016 Rosacea Survey is completed and available for public viewing.  You may review a list of our education grants

    What Can You Do for the RRDi?

    Your joining and registering with our organization will increase our membership. All that is required is a cryptic display name and and an email address to join (your email address is private and members never see your email address nor does the RRDi give your private email address out to anyone). 

    Any donation you give will assist us to continue to keep this web site going, publish our journal, and sponsor education grantsMahalo for your donation. even if it is small. Every dollar helps us keep going. 

    The RRDi is a volunteeer member driven organization and invites rosacea sufferers to become involved. Volunteering is the force that drives the organization and is an integral spirit of the RRDi philosophy. The RRDi warmly invites rosacea sufferers to participate in this non profit which you can become a part of. You are not required to volunteer when you join, since we still want you to join even if you can't volunteer. If all you can do is become a member, that will increase our membership which is helpful in itself. So if you can volunteer, let us know on the application. Please join

    You can post in our member forum about your rosacea experience. However, we want real members, not spammers, hackers or trolls. We provide a safe, secure forum for our members. So our membership registration is very secure requiring your accepting our terms for membership. Please carefully read the next subheading on how to join and if you have concerns about privacy. 

    How to Join

    Members may now join with just an email address and a cryptic display name (your first and last name is no longer required to be a non voting member). To post in our Member Forum or submit articles for publication you must register to join to become a member. The RRDi no longer requires that you provide us with your contact info and mailing address to be a non voting member. However you still need to agree to our policies, rules, etc., since you become a member of the RRDi whether a voting member or not. If you want to vote, simply include all the profile contact fields. We have over 1000 members who are voting members, so we have plenty. It is your choice if you want to vote or not. 

    If you need assistance contact us. Our volunteers will be happy to assist you. 

    Your privacy is our utmost concern and we will take precautions to ensure your privacy will never be violated. Our Privacy Policy is solid. If you have concerns regarding your privacy, please consider this post.

    Once you have joined you can post in our secure members forum which will allow you to post questions to the Medical Advisory Consultants (MAC) and to fellow members or to submit articles for our journal. Yes, members may have an article published on our web site or in our journal. You may receive a free G Suite account with our organization if you have the volunteer spirit. 

    Conclusion

    The Charter of the Corporation states the purpose and Mission Statement which clearly outlines the goals of our non profit corporation. If you are interested in the history of how and why this non profit organization was formed click here for more information.  Mahalo. 

    The RRDi is registered at GuideStar

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  • Posts

    • A simple compound of water with a tincture of sodium Chlorite (not to be confused with sodium chloride/table salt) has proven effective for many skin ailments, as well as HIV.  Here are some links:   https://www.google.ca/patents/US4507285 https://www.google.com/patents/US6086922 https://www.google.ca/patents/US6086922
    • "The Vbeam Perfecta is such a treatment and has rapidly become the gold standard for addressing rosacea. It uses the latest generation pulsed dye laser delivering a powerful but gentle burst of light which is absorbed by specific blood vessels. This protocol has proven itself as safe and effective for reducing red/vascular lesions and certain non-pigmented lesions with a low incidence of side effects." Rosacea Treatment Using Top of the Line Technology available at Skin & Laser Surgery Center, Digital Journal
    • The RRDi was legally formed as a 501 c 3 non profit organization for rosacea in 2004. Setting up a non profit is not for the timid or faint of heart. What I have found is that most rosacea sufferers could care less how a non profit spends is donations. Case in point is how the NRS spends its donations (if you do care read this page). I have done a great deal of investigation into non profits and how they spend their donations and you can read the results of this investigation if you are interested in this thread.  If you think that the RRDi mission statement and purpose is a good idea and want to keep the RRDi going someone really has to take over and carry the baton since I am now 67 years old, have a heart condition, and basically keeping this ship floating pretty much by myself. The other members of the board of directors have their own lives and can give very little volunteer time to the RRDi. We need some board members that are active.  I have reached out to others but there are not many who can volunteer as I have done for all these years. Basically what you have is three non profits for rosacea, the RRDi, the NRS, and the AARS. The RRDi is the only non profit organized by rosacea sufferers. The other two non profits are organized by non rosacea sufferers. If you think the RRDi is a good idea and should continue and grow into a better organization some of you must step up to the plate and start swinging. Otherwise, the RRDi is going to dissolve. So think about it and let me know if you can help. I need help and this is a call to arms. 
    • I read the Brownstein article which is a good read. When I was an EMT in my training I was also told to add 100 to the patients age to reach the systolic threshold. If the patient's systolic was higher than this number the patient had high blood pressure. I still feel the same way about what is considered high blood pressure and also feel the same as Dr. Brownstein about these new BP standards.  Thanks for the article.  I have always had low blood pressure. At the end of 2015 I had heart issues and was in the hospital for 12 days they gave me a plethora of cardiac drugs, many of them lowering my blood pressure further, until they came up with a concoction of a handful of drugs I was to take after leaving the hospital and took them along with lasix for about year, After drastically changing my diet (no alcohol or coffee for a year) and increasing my exercise I got dramatically better and now only take 25 mg of Carvedilol and one 81 mg of aspirin a day. My blood pressure is still low. My heart is a lot better. Flushing?  I flush no more than the general population. 
    • Thanks Mistica for your post on iodine. I have added iodine to the first post mentioning your post. My wife takes kelp drops. I don't have any flushing issues since I take Carvedilol. 
    • I'd like to mention iodine.  I was found to be iodine deficient by two spot urine tests. There is debate about which test is the more accurate. The 24 hour urine collection, after taking a very high dose of iodine. Or the spot test. Each camp will offer proof as to which test should be the favoured one. Those in the 50 mg dose camp insist there are never any side effects. I would beg to differ. Too much iodine can cause flushing even in non flushers and  anecdotal reports of this can be found in forums. Like many triggers, it can cause persistent flushing. And of course there are the thyroid issues, but they don't seem to be as prevalent as official literature suggests. However, lower doses can be helpful. I had a difficult time adjusting to iodine, but the biggest improvement I had was a significant reduction in flushing. In particular, nose flushing. My nose flushing used to be hell and uncontrollable. These days it is much milder.  I take several supplements but it was the iodine that made the quickest and most obvious impact. (Iodine+niacinamide+vitamin C). I took all separately initially. What is interesting, is that a quick google can turn up  anecdotal reports from menopausal women who found their hot flashes reduced or completely resolved following iodine supplementation. There are users who have triggered flushing too, so I tend to think testing for deficiency is prudent before trialling iodine. There are a few breast cancer survivors who report the same benefit. So one must consider, aside from thyroid health,  what role or roles does iodine have in vasodilation, hormonal balance and vascular health? My physician (and others) have noted the potent anti inflammatory effects of iodine. I have regular blood tests including a full thyroid panel to monitor thyroid function as I developed Hashimoto's due to iodine deficiency and my on going gut flora issues. I also had lowish zinc and borderline low retinol, but it has been pointed out to me by my physician and my scientist mentors, that tests for nutritional deficiencies aren't overly accurate, not unless someone is extremely deficient. It is interesting to note, that some of the worst flushers on the forum, have thyroid disease -  and nutritional deficiencies and insufficiencies have been linked to thyroid dysfunction. Along with gut issues. Then there is the query as to whether blood serum levels are reflective of cellular levels. Personally I think this is an area which needs exploration. As usual, multiple questions and no answers. Alas.      
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