Jump to content

Guide

Root Admin
  • Posts

    3,761
  • Joined

  • Last visited

About Guide

Profile Information

  • Country
    USA

RRDi required

  • Are you a rosacean?
    Yes

Recent Profile Visitors

11,345 profile views

Guide's Achievements

Grand Master

Grand Master (14/14)

  • Dedicated Rare
  • Week One Done
  • One Month Later
  • One Year In
  • Conversation Starter Rare

Recent Badges

0

Reputation

  1. This topic has been researched a lot. There are many, many published articles on this subject. We even have our own extensive post on this subject. Think about it, is this what you as a rosacea sufferer want clinical studies and scientific medical journals to spend money on? The above article was published by the Dermatology Online Journal.
  2. Another study on bacteria and rosacea which adds cutibacterium acens being LOWER and substantiating other papers that staphylococcus epidermis is higher in the 17 in the case group who had rosacea. No mention of other microbes, which is generally what western medicine focuses on including studies on rosacea. There are three other bacteria that are mentioned in rosacea studies which we list in this category Wouldn't it be incredible if 10,000 rosaceans got together and each one donated just one dollar and sponsored through a legal non profit organization for rosacea to investigate microbes other than bacteria, i.e., virus, archea, or for that matter whatever the 10,000 rosaceans wanted investigated by a show of hands? Could rosaceans actually come together and do their own rosacea research?
  3. The conclusion of this study is mind boggling. Just think about it for a few seconds. So much for WC Fields as the rosacea poster boy.
  4. We have tried over the last twenty years to figure out how to get rosacea sufferers to come together into a patient advocacy non profit organization, to fulfill our MISSION STATEMENT. Currently we are only allowing subscribed members to post. We have a few active members but so far, as of this date, March 12. 2024, none of our few active members post. If you have an idea on how we can get members to post, why not find the reply to this topic button (only subscribed members can post) and tell us what you think? So if you only post on social media rosacea websites, why do you feel comfortable doing this? What is it about our forum style website that makes you feel uncomfortable to post? We could use some young rosacea blood to stimulate posts and keep our non profit going. You want to run this non profit? Post and tell us what you think. Post.
  5. We have added Tumid lupus as a Rosacea mimic to our official list.
  6. The above video was made a while ago, I think in 2021. If you think you know how to run a patient advocacy non profit organization why not join and take over. If your ideas are better then serve on the board of directors and help us. Maybe you can get the skin industry to sponsor your ideas and then get paid as the NRS runs its non profit that is run by businessmen and dermatologists. Maybe you could get a dermatologist on our board. But before you do, you might want to read all our rules, mission statement, charter, privacy policy, and legal disclaimer to see what is involved. You can make a lot of money running a non profit since many non profits have salaried directors and employees. Non profits make billions of dollars and pay lot of money out for services and salaries. We could setup the RRDi in your home state or country and you run it! I can teach you what you need to know about our financial situation and how you can continue receiving donations. We did receive six thousand dollars over the hears in grants from Galderma, but getting volunteer grant writers is like pulling teeth. Maybe you know how to get grants?
  7. The RRDi has stopped reviewing the NRS with regard to how it spends its donations since rosaceans could care less. The last review above is for 2020 but since rosaceans could care less, there is no point it being the lone watchdog on the NRS. Let Samuel and Andrew Huff who sit on the board of directors of this non profit keep getting around 60% of the expenditures of the NRS through their profit organizations which is legal and rosaceans keep donating to the NRS and think this is how a non profit for rosacea should be run. I imagine Sam and Andrew have nice homes, expensive vehicles and take nice vacations. Good for Sam and Andrew who know how to get rosaceans to donate to their 'non profit' for rosacea. The skin industry loves the NRS and continues to give the vast majority of the donations since the public donates about 23.58% of the total donations which means 76.42% of the donations to the NRS are sponsored by the skin industry over period from 1998 through 2020. Rosaceans love it that the NRS is run by businessmen and dermatologists and is not a patient advocacy non profit but instead a non profit supported mainly by the skin industry. It is so sad that rosaceans don't want to come together in a united non profit group that supports patient advocacy for rosacea, engaging in their own research, not relying on the skin industry. So sad.
  8. As you can see, this case of a Filipino woman in her forties went through many treatments until she got a correct diagnosis of tinea faciei with steroid rosacea, it is important to get a correct diagnosis. Learn more.
  9. What about Botox for rosacea? Answer
  10. This is an example of clinicians who still rely on the Subtype classification of rosacea which was abandoned several years ago. ETR is subtype 1. The new classification of rosacea into phenotypes separates this subtype into two phenotypes: (2) Persistent Erythema (3) Telangiectasia Dapsone has been used to treat Granulomatous Rosacea [also known as Lupoid rosacea] [1] as well as PPR [2] [1] Hautarzt. 2013 Apr;64(4):226-8. doi: 10.1007/s00105-013-2556-7. Successful treatment of granulomatous rosacea with dapsone. Ehmann LM, Meller S, Homey B. Hautklinik des Universitätsklinikums Düsseldorf, Moorenstr. 5, 40225, Düsseldorf, Deutschland. PubMed RSS Feed - - Dapsone  for Unresponsive Granulomatous Rosacea. [2] Dapsone Gel in the Treatment of Papulopustular Rosacea: A Double-Blind Randomized Clinical Trial.
  11. This test seems to have cornered the diagnosis of different skin diseases. Gate Recurrent Unit [GRU] "introduced in 2014 by Kyunghyun Cho et al." Wikipedia Maybe we will hear more about this in diagnosing rosacea?
  12. This is a new variant of demodicidosis (demodectic rosacea). The variants keep growing.
  13. The RRDi has an extensive list of non prescription treatments for rosacea including natural treatments. Click Here
×
×
  • Create New...

Important Information

Terms of Use