Jump to content
  • 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. If you have questions contact us. If you want to know who we are read this page

    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 sufferers of Rosacea 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 rosacea.

    "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

    The RRDi has 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 the time. Rosacea, therefore, can be confusing, a bewilderment and a mystery

    What will the RRDi Do For Me?

    You can view the list of prescription treatments prescribed for rosacea which members can review. There is a huge 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 RRDi is way ahead of other rosacea non profit organizations with the digital medical revolution. 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. 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. We have a chat tool available to members. 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. 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 joinIf you want to remain anonymous when becoming a member of the RRDi you may find it helpful to read this post before joining. We respect your anonymity and will support your remaining anonymous as a member of the RRDi if that is your preference. 

    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 display name. You may want to read our post about Anonymity, Transparency and Posting before joining which explains in a step by step process how to remain anonymous in our member forum. 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 but with no voting privileges. However you still need to agree to our policies since you become a corporate member of the RRDi. If you want to vote contact us. Your privacy is our utmost concern and we will take precautions to ensure your privacy will not 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 upon approval that 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

  • Recently Browsing   0 members

    No registered users viewing this page.

  • Who's Online   0 Members, 0 Anonymous, 9 Guests (See full list)

    There are no registered users currently online



  • Member Statistics

    • Total Members
      1,063
    • Most Online
      325

    Newest Member
    Marianne Cronin
    Joined
  • Forum Statistics

    • Total Topics
      3,384
    • Total Posts
      4,345
  • Posts

    • Related Articles Spotlight on brimonidine topical gel 0.33% for facial erythema of rosacea: safety, efficacy, and patient acceptability. Patient Prefer Adherence. 2017;11:1143-1150 Authors: Anderson MS, Nadkarni A, Cardwell LA, Alinia H, Feldman SR Abstract
      BACKGROUND: Brimonidine tartrate is a highly selective alpha 2 agonist that induces direct vasoconstriction of small arteries and veins, thereby reducing vasodilation and edema.
      OBJECTIVE: To review the current literature regarding the safety, efficacy, and patient acceptability of brimonidine 0.33% gel.
      METHODS: A PubMed search was performed using the terms brimonidine 0.33% gel, rosacea, safety, efficacy, and acceptability. Peer-reviewed clinical trials and case reports from 2012 to 2016 were screened for inclusion of safety, efficacy, and/or patient acceptability data.
      RESULTS: Brimonidine topical gel 0.33% is associated with mild, transient skin-related adverse reactions. Efficacy may be achieved within 30 minutes of administration with maximal reductions in erythema 3-6 hours after administration. Patient satisfaction with use of brimonidine topical gel is superior to vehicle gel for facial appearance, treatment effect, facial redness, and daily control of facial redness.
      LIMITATIONS: Studies were typically limited to 1-year follow-up. Only one study has examined the use of brimonidine topical gel in combination with other rosacea and acne medications.
      DISCUSSION: Brimonidine topical gel 0.33% is a safe, effective, and patient-accepted treatment for facial erythema of rosacea.
      PMID: 28740369 [PubMed] {url} = URL to article
    • Related Articles Late onset asymptomatic pancreatic neuroendocrine tumor - A case report on the phenotypic expansion for MEN1. Hered Cancer Clin Pract. 2017;15:10 Authors: Kaiwar C, Macklin SK, Gass JM, Jackson J, Klee EW, Hines SL, Stauffer JA, Atwal PS Abstract
      BACKGROUND: Multiple endocrine neoplasia type 1 (MEN1) is a hereditary cancer syndrome associated with several endocrine as well as non-endocrine tumors and is caused by mutations in the MEN1 gene. Primary hyperparathyroidism affects the majority of MEN1 individuals by age 50 years. Additionally, MEN1 mutations trigger familial isolated hyperparathyroidism. We describe a seemingly unaffected 76-year-old female who presented to our Genetics Clinic with a family history of primary hyperparathyroidism and the identification of a pathogenic MEN1 variant.
      CASE PRESENTATION: The patient was a 76 year-old woman who appeared to be unaffected. She had a family history of a known MEN1 pathogenic variant. Molecular testing for the known MEN1 mutation c.1A > G, as well as, biochemical testing, MRI of the brain and abdomen were all performed using standard methods. Molecular testing revealed our patient possessed the MEN1 pathogenic variant previously identified in her two offspring. Physical exam revealed red facial papules with onset in her seventies, involving her cheeks, nose and upper lip. Formerly, she was diagnosed with rosacea by a dermatologist and noted no improvement with treatment. Clinically, these lesions appeared to be facial angiofibromas. Brain MRI was normal. However, an MRI of her abdomen revealed a 1.5 cm lesion at the tail of the pancreas with normal adrenal glands. Glucagon was mildly elevated and pancreatic polypeptide was nearly seven times the upper limit of the normal range. The patient underwent spleen sparing distal pancreatectomy and subsequent pathology was consistent with a well-differentiated pancreatic neuroendocrine tumor (pNET).
      CONCLUSIONS: Age-related penetrance and variable expressivity are well documented in families with MEN1. It is thought that nearly all individuals with MEN1 manifest disease by age 40. We present a case of late-onset MEN1 in the absence of the most common feature, primary hyperparathyroidism, but with the presence of a pNET and cutaneous findings. This family expands the phenotype associated with the c.1A > G pathogenic variant and highlights the importance of providing comprehensive assessment of MEN1 mutation carriers in families that at first blush may appear to have isolated hyperparathyroidism.
      PMID: 28736585 [PubMed] {url} = URL to article
    • The Healthy Geezer: Red, bumpy nose is rosacea, not booze, By Fred Cicetti, Times Herald-Record
    • Related Articles Improvement of Rosacea During Acyclovir Treatment: A Case Report. Am J Clin Dermatol. 2017 Jul 21;: Authors: Badieyan ZS, Hoseini SS PMID: 28733947 [PubMed - as supplied by publisher] {url} = URL to article
    • Phymatous (Rhinophyma) [aka Subtype 3] This phenotype responds to treatment very well. Phymatous rosacea is uncommon. The most frequent phymatous manifestation is rhinophyma (known familiarly as "whiskey nose" "brandy nose" or "rum blossom"). In its severe forms, rhinophyma is a disfiguring condition of the nose resulting from hyperplasia of both the sebaceous glands and the connective tissue. Rhinophyma occurs much more often in men than in women (approximate ratio, 20:1), [1] and a number of clinicopathologic variants have been described. [2] Although rhinophyma is often referred to as "end-stage rosacea," it may occur in patients with few or no other features of rosacea. The diagnosis is usually made on a clinical basis, but a biopsy may be necessary to distinguish atypical, or nodular, rhinophyma from lupus pernio (sarcoidosis of the nose); basal-cell, squamous-cell, and sebaceous carcinomas; angiosarcoma; and even nasal lymphoma. [3] Older papers usually mention how rosacea progresses in stages and ends up in subtype 3, but recent studies indicate that this is not necessarily true. One can develop phenotype 5 without going through any 'stages.' [read this post] One report says, "It can affect nose (rhinophyma), chin (gnatophyma), forehead (metophyma), ears (otophyma) and eyelids (blepharophyma). Rhinophyma is the most frequent location..." [15] For images of phenotype 5 (formerly Subtype 3) click below: http://goo.gl/BI2lf;  28 Images of Rhinophyma A classic example of Subtype 3 is WC Fields (the rosacea poster boy):
      Another classic example is this painting in the Louvre, "The Old Man and His Grandson" by Ghirlandiao around the year 1480.


      There are Five Variants of Rhinophyma:
      Glandular
      Fibrous
      FibroangiomatousActinic
      Rhinophymous
      leishmaniasis  This is a great thread to read about Subtype 3. Treatment There are a number of different treatments for rhinophyma, including surgery, but it is better to treat the rosacea before it reaches the advance stage of rhinophyma. However, once rhinophyma has developed it can usually be corrected by surgery using either laser, scapel, or dermabrasion. The good thing about rhinophyma is that though this condition is generally regarded as a severe form of rosacea it is a relatively rare disorder involving thickening of the skin on the nose and the presence of many oil glands and this condition can usually can be corrected. Accutane is usually the drug of choice, but your physician may use other prescription drugs such as antibiotics if you have this skin disorder. Other treatment may involve cryosurgery, dermashaving and electrosurgery. "Coblation of rhinophyma is an effective treatment with few side effects." [4] ""...Initially, the mass was thought to be rhinophyma, but biopsy of the mass revealed noncaseating granulomata consistent with sarcoidosis. The mass resolved following several steroid injections..." [5] Radiofrequency is used to treat rhinophyma. [6]Rhinophyma treated with kilovoltage photons {7]Treatment of rhinophyma with ultrasonic scalpel: case report [8] Radiosurgical excision of rhinophyma. [9] "Surgery is indisputably the treatment of choice for rhinophyma." [10] This report said, "Despite many advances in fundamental understanding, surgical techniques, and related technologies, no single method has been universally embraced and employed as the "gold standard." " [11] Smoothbeam laser [13] Surgical Management [14] Another report says, "Both tangential excision and carbon dioxide laser are well-established, reliable procedures for rhinophymaplasty that preserve the underlying sebaceous gland fundi allowing spontaneous re-epithelialization without scarring with similar outcomes and high patient satisfaction. The original nose shape and nearly normal skin surface texture are preserved by quickly removal of the hypertrophic tissue sparing the pilosebaceous tissue. The CO(2) laser is more capital intensive and results in higher fees compared with the simpler cold blade tangential excision. In our experience the ease of use, accuracy and precision of the lasers offer is not justified by the increased costs." [16] Another report, which says, "a surgical "gold standard" for treating the distorting phymatous skin alterations has not yet been established," it goes on to state, "the combination of a bovine collagen-elastin with simultaneous autologous non-meshed split-thickness skin grafting" was used in a surgery, and "may ultimately avoid the recurrence of rhinophyma and contribute to a full skin repair leading to satisfactory functional and aesthetic outcome." [17] "This report describes a simple, safe, efficient, and cost-effective approach to the treatment of severe rhinophyma using a scalpel and the electroscalpel, instruments readily available in every operating room." [18] Scalpel Excision and Wire Loop Tip Electrosurgery [19] One reports says, "The CO2 laser is more capital intensive and results in higher fees compared with the simpler cold blade tangential excision. In our experience the ease of use, accuracy and precision of the lasers offer is not justified by the increased costs." [20] Salicylic acid 30% • Jojoba oil • Glycolic acid 70% • Baking Soda • Dawn Ultra Low Dose Isotretinoin Another treatment has been reported, coblation. The report says, "A hand-held coblation ‘wand’ emits a slow stream of saline solution – sterilised salt water – from the end that comes into contact with the nose. At the same time, it emits waves of radiofrequency energy to excite the molecules in the solution which ‘sands’ down the tissue. It also uses a low heat to cauterise (clot) any bleeding blood vessels." [12] Anecdotal Reports  Nose Swelling, big pores, phymous tissue--please post! End Notes [1] Roberts JO, Ward CM. Rhinophyma. J R Soc Med 1985;78:678-681.[iSI] [Medline] [2] Aloi F, Tomasini C, Soro E, Pippione M.
      The clinicopathologic spectrum of rhinophyma.
      J Am Acad Dermatol 2000;42:468-472.[CrossRef][iSI] [Medline] [3] Murphy A, O'Keane JC, Blayney A, Powell FC.
      Cutaneous presentation of nasal lymphoma: a report of two cases.
      J Am Acad Dermatol 1998;38:310-313.[iSI] [Medline]

      [4] Coblation of rhinophyma.
      Timms M, Roper A, Patrick C.J Laryngol Otol. 2011 Apr 27:1-5.

      [5] Sarcoidosis of the external nose mimicking rhinophyma. Case report and review of the literature.
      Goldenberg JD, Kotler HS, Shamsai R, Gruber B.Ann Otol Rhinol Laryngol. 1998 Jun;107(6):514-8.

      [6] Management of mild to moderate rhinophyma with a radiofrequency.
      Erisir F, Isildak H, Haciyev Y.J Craniofac Surg. 2009 Mar;20(2):455-6. [7] Rhinophyma treated with kilovoltage photons.
      Skala M, Delaney G, Towell V, Vladica N.Australas J Dermatol. 2005 May;46(2):88-9. [8] Treatment of rhinophyma with ultrasonic scalpel: case report.
      Tenna S, Gigliofiorito P, Langella M, Carusi C, Persichetti P.J Plast Reconstr Aesthet Surg. 2009 Jun;62(6):e164-5. Epub 2008 Dec 12. [9] Radiosurgical excision of rhinophyma.
      Somogyvári K, Battyáni Z, Móricz P, Gerlinger I.Dermatol Surg. 2011 May;37(5):684-7.
      doi: 10.1111/j.1524-4725.2011.01965.x. Epub 2011 Apr 1. Letter: radiosurgical excision of rhinophyma.
      Niamtu J 3rd.Dermatol Surg. 2012 May;38(5):816-7. doi: 10.1111/j.1524-4725.2012.02383.x. [10] Rhinophyma in rosacea : What does surgery achieve?
      Sadick H, Riedel F, Bran G.Hautarzt. 2011 Oct 19. [11] Nuances in the management of rhinophyma.
      Facial Plast Surg. 2012 Apr;28(2):231-7Authors: Little SC, Stucker FJ, Compton A, Park SS [12] How salt-blasting surgery cured my disfiguring condition called 'drinker's red nose'
      By ROGER DOBSON
      Mail Online / Health
      PUBLISHED: 16:07 EST, 12 May 2012 | UPDATED: 17:23 EST, 12 May 2012
      Read more: http://www.dailymail...l#ixzz1uvARY8Et [13] J Dermatolog Treat.
      2012 Apr;23(2):153-5. Epub 2010 Oct 22. Moderate rhinophyma successfully treated with a Smoothbeam laser.
      Chou CL, Chiang YY [14] Conn Med. 2014 Mar;78(3):159-60.
      Surgical management of rhinophyma: a case report and review of literature.
      Ferneini EM, Banki M, Paletta F, Ferneini CM. [15] An Bras Dermatol. 2012 Dec;87(6):903-5.
      Gnatophyma: a rare form of rosacea.
      Macedo AC, Sakai FD, Vasconcelos RC, Duarte AA. [16] J Craniomaxillofac Surg. 2012 Dec 8. pii: S1010-5182(12)00248-X. doi: 10.1016/j.jcms.2012.11.009.
      Surgical correction of rhinophyma: Comparison of two methods in a 15-year-long experience.
      Lazzeri D, Larcher L, Huemer GM, Riml S, Grassetti L, Pantaloni M, Li Q, Zhang YX, Spinelli G, Agostini T. [17] Int J Surg Case Rep. 2012 Nov 10;4(2):200-203. doi: 10.1016/j.ijscr.2012.11.003. [Epub ahead of print]
      The surgical treatment of rhinophyma-Complete excision and single-step reconstruction by use of a collagen-elastin matrix and an autologous non-meshed split-thickness skin graft.
      Selig HF, Lumenta DB, Kamolz LP. Aesthetic Plast Surg. 2013 Jan 8. [Epub ahead of print] Optimizing Cosmesis with Conservative Surgical Excision in a Giant Rhinophyma. Lazzeri D, Agostini T, Spinelli G.   [18] Aesthetic Plast Surg. 2013 Mar 1. [Epub ahead of print] Management of Severe Rhinophyma With Sculpting Surgical Decortication. Husein-Elahmed H, Armijo-Lozano R.   [19] Dermatol Surg. 2013 Apr 5. doi: 10.1111/dsu.12193. [Epub ahead of print] Treatment of Severe Rhinophyma Using Scalpel Excision and Wire Loop Tip Electrosurgery. Prado R, Funke A, Brown M, Ramsey Mellette J. Source
      Northeast Dermatology Associates, Andover, Massachusetts. [20] J Craniomaxillofac Surg. 2013 Jul;41(5):429-36. doi: 10.1016/j.jcms.2012.11.009. Epub 2012 Dec 8.
      Surgical correction of rhinophyma: comparison of two methods in a 15-year-long experience.
      Lazzeri D1, Larcher L, Huemer GM, Riml S, Grassetti L, Pantaloni M, Li Q, Zhang YX, Spinelli G, Agostini T.
    • Related Articles [Rosacea: New data for better care]. Ann Dermatol Venereol. 2017 Jul 17;: Authors: Cribier B Abstract
      In the last 10 years, numerous studies have been published that throw new light on rosacea, in all areas of the disease. This overview summarises all the key developments, based on the indexed bibliography appearing in Medline between 2007 and 2017. Recent epidemiological data show that the prevalence of the disease is doubtless greater than estimated hitherto (more than 10% of adults in some countries) and that we should not overlook rosacea in subjects with skin phototypes V or VI, a condition that exists on all continents. A new classification of rosacea by phenotype comprising major and minor signs has been put forward; it provides a more rational approach to suitable management based upon symptoms, the severity of which may be graded into 5 classes. The treatments with the best-demonstrated efficacy (updated Cochrane study) are topical metronidazole, azelaic acid and ivermectin, and oral doxycycline; isotretinoin is effective against resistant forms but is off-label. In ocular rosacea, the reference treatment is doxycycline in combination with topical therapy of the eyelids. The physiopathology is complex and involves several factors: vascular (vasodilatation, vascular growth factors), neurovascular (hypersensitivity, neuropathic pain, neuropeptides), infectious (Demodex folliculorum and its microbiota) and inflammatory (abnormal production of pro-inflammatory peptides of the innate immune system). In addition, there is a genetic predisposition as demonstrated by the weight of familial history and comparison of homozygous and heterozygous twins. There is also activation of several genes involved in immunity, inflammation and lipid metabolism; the theory of hydrolipid film anomalies has been posited once more. There has thus been a tremendous leap forward in the field of rosacea research, with therapeutic progress and improved understanding of the underlying mechanisms, which should enable the future development of more targeted treatments as well as global management of this disease, which has major social and emotional consequences on the life of patients.
      PMID: 28728857 [PubMed - as supplied by publisher] {url} = URL to article
×