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Thread: 10 Years In - If Your Struggling Please Read

  1. #11
    Senior Member Mistica's Avatar
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    To me the crazy idea is that rosaceans don't want to do something about this themselves and come together into a cohesive patient advocacy group for rosacea. They want the cure handed to them in a pill or topical.
    Hey Brady,

    I feel your frustration.
    I also acknowledge and appreciate all your efforts on behalf of rosaceans and flushers and in theory I support the idea that we can guide researchers to undertake studies.

    However, biology, biochemistry, neurology, immunology etc, are vast, complex subjects and given none of the many members of the RRDI, who happen to be physicians, and or scientists, can even propose a study that has merit, isn't it a bit much expecting lay people to do so?

    I have noted at least one member peddling lotions and potions. I realise that sounds harsh, but I am referring to the mentally, ie, 'this is a skin problem'. A erroneous approach.
    In my opinion, this is a gastrointestinal/microbiome, immunological, neurological problem, which then manifests itself visually.

    Many years ago, medicine wasn't divided up into different branches to the extent they became divorced from one another. Now-a-days they are. It is the wrong approach as all systems are interconnected. Fortunately a subset of physicians are finally realising that we have to treat the body as a whole in order to regain health. Slowly, probably, very slowly, the rest of the medical field will follow suit.

    The 'pop a pill' or 'apply a topical' approach is the result of Big Pharma. People have been programmed to think that way, but it is slowly changing, and the internet, science blogs and forums such as these are huge drivers of change.

    I know you feel you haven't achieved anything worthwhile, but I beg to differ.
    We, as a group, over all, have made a positive impact on the lives of people who suffer from these horrible conditions.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  2. #12
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    Quote Originally Posted by sportsfan81 View Post
    Hey Everyone,

    Spoiler - this will be long, sorry in advance

    I wanted to write this post as it has been about 10 years since I first started having some pretty noticeable symptoms of Rosacea and ultimately got the diagnosis. I can tell you that it was a very rough start as we all know this is progressive and affects you in so many ways. I have been through some bad depression, thoughts/contemplation of suicide, and just some very dark places mentally over the years. That being said I have lead a pretty happy and successful life especially the past 4-5 years because I have learned to accept most of what comes with this disease and instead focus on what I am doing and enjoying life vs trying to hide. I have a very successful career, have some great family/friends, have had great relationships/girlfriends, go to bars & sporting events all the time. All of this which when I go back to the first five yrs dealing with this I never thought was possible.

    Quick background on me: I am 31 yr old male and have what used to be called type 1 but basically deal with persistent redness and constant flushing. I have tried the gambit of treatments to include: Vbeam (5-6x), all moisturizers/redness reducers/skin care products, different meds to include years of taking clonidine, RLT (Had IowaDavids device), Mirvaso which was a horrible decision haha, I even wear make-up (just foundation).

    I went through the first five years of this disease changing who I was and avoiding everything except my work to get away from being seen with this condition. I got lucky to initially work in fitness and sports so I could work out during the day and blame that for all the redness. Ultimately though I couldnít sit or move in a warm room or dare be in the cold for 5 mins without a reaction. I found this forum which was a blessing because I learned so much and got to see everyone elseís experience although it just didnít seem like it was enough to push me to accept and instead I spent countless hours daily waiting for a new cure or remedy. I actually donít come back here often anymore because I found that I was constantly thinking about my condition which took time from more important aspects of life. In no way is his place bad, it is amazing it was just what I had to do.

    Fast forward to now, I still battle with this I wont lie but I worry more about loss of hair (thank god for hims!) or my noisey stomach then I do my rosacea. I refuse to let my condition stop me from doing anything even if I know I will flush because I know that ppl wont remember the one night you went out and had a red face but they will remember all the fun, deep talks, and hard work you put out. I love going out to bars, red face ears whatever, sometime ppl are too drunk to notice idk haha, I work out daily, I go out with friends to games and go to the beach. Sure I still have my strategies to try and avoid symptoms and flushes but it doesnít stop me anymore and I am happier for it.
    The whole point of this post is that I wish I had someone I could have talked to who could have told me in 10 yrs your gonna laugh and learn a lot and think how dumb it was to let this stuff prevent you from living life. So I wanna offer that help if anyone is needing it whether your struggling for support, donít know how to live normally, or have questions on my treatment/strategies. Again, I wear make-up daily Ė have never been asked about it (wearing for 4-5 yrs) so if youíre a guy and maybe thatís something you wanna know about let me know. I donít get on often but will try to more even if its to respond to DMs and comments. If there is one thing I have now in these 10 yrs is experience and I would like to help if I can, maybe I cant and thatís fine but if this resonates at all with you feel free and reach out.
    As a male struggling whatcha recommend foundation wise?

  3. #13
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    Quote Originally Posted by TSW1988 View Post
    As a male struggling whatcha recommend foundation wise?
    Hey TSW,

    Iíve tried a few but I like Dermablend foundation plus itís spf 25. See below on what I use, I apply and then blend in with a make up sponge. If you have never used make up before let me know I can help you with some techniques to ensure it looks natural and not like your actually wearing make up.


    https://www.dermablend.com/foundatio...gid=foundation


    Sent from my iPhone using Tapatalk

  4. #14
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Mistica View Post
    However, biology, biochemistry, neurology, immunology etc, are vast, complex subjects and given none of the many members of the RRDI, who happen to be physicians, and or scientists, can even propose a study that has merit, isn't it a bit much expecting lay people to do so?
    It appears you have hit the nail on the head. Dr. Bamford wrote an article in the Journal of the RRDi, Is it Possible for Rosaceans to Do Research, and it looks like they simply are not capable of doing it. Sad, isn't it?

    Yet rosaceans continue to donate to the NRS and it boggles my mind they prefer the status quo rosacea research the NRS engages in and how little the NRS spends on this, around 10% of the donations (to put this into perspective for every dollar the NRS spends on rosacea research ten cents is spent while 90 cents is spent on everything else including 60 cents on two private contractors owned by Sam Huff, the President/Director of the NRS and basically everyone thinks the NRS is doing a great job).
    Brady Barrows
    Blog ē Join the RRDi



  5. #15
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    It appears you have hit the nail on the head. Dr. Bamford wrote an article in the Journal of the RRDi, Is it Possible for Rosaceans to Do Research, and it looks like they simply are not capable of doing it. Sad, isn't it?

    Yet rosaceans continue to donate to the NRS and it boggles my mind they prefer the status quo rosacea research the NRS engages in and how little the NRS spends on this, around 10% of the donations (to put this into perspective for every dollar the NRS spends on rosacea research ten cents is spent while 90 cents is spent on everything else including 60 cents on two private contractors owned by Sam Huff, the President/Director of the NRS and basically everyone thinks the NRS is doing a great job).
    There was an MD who published at least 2 papers on EM, as a patient having EM. He was a psychiatrist if I remember right, so I don't think he used his MD at all really to do this. They were basically info based on surveys from The Erythromelalgia Assoc. Since EM is so rare, that might have helped him be able to publish. (most doctors do not see a case in their career, eg, - as far as i know there has been only one randomized controlled trial).

    I remember there was a published paper that mentioned Mirvaso's bad reputation amongst internet blogs etc - So I think the huge number of internet reports of Mirvaso badness actually did amount to something (and likely saved many incl me from terrible rebound). I also think Nat's huge amount of info on meds she's tried, have guided many to trial mirtazapine, clonidine, beta blockers which I know have helped many (though not me). And so these unpublished reports - incredibly worthwhile. In fact an Australian 2018 rosacea paper mentions mirtazapine for flushing/redness treatment - I think Nat's "spreading the word" might have contributed.
    Last edited by laser_cat; 5th February 2020 at 06:16 AM.

  6. #16
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    Quote Originally Posted by sportsfan81 View Post
    Hey TSW,

    Iíve tried a few but I like Dermablend foundation plus itís spf 25. See below on what I use, I apply and then blend in with a make up sponge. If you have never used make up before let me know I can help you with some techniques to ensure it looks natural and not like your actually wearing make up.


    https://www.dermablend.com/foundatio...gid=foundation


    Sent from my iPhone using Tapatalk
    Please

  7. #17
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    Quote Originally Posted by sportsfan81 View Post
    Hey TSW,

    Iíve tried a few but I like Dermablend foundation plus itís spf 25. See below on what I use, I apply and then blend in with a make up sponge. If you have never used make up before let me know I can help you with some techniques to ensure it looks natural and not like your actually wearing make up.


    https://www.dermablend.com/foundatio...gid=foundation


    Sent from my iPhone using Tapatalk
    For some reason itís not letting me inbox you

  8. #18
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    Quote Originally Posted by TSW1988 View Post
    For some reason itís not letting me inbox you
    Hey, sorry for the day I havenít checked in a few days. I will inbox you and get in more detail what I do, things I have learned to do in applying etc.


    Sent from my iPhone using Tapatalk

  9. #19
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    Quote Originally Posted by sportsfan81 View Post
    Hey, sorry for the day I havenít checked in a few days. I will inbox you and get in more detail what I do, things I have learned to do in applying etc.


    Sent from my iPhone using Tapatalk
    Hi I have replied

  10. #20
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    Quote Originally Posted by Brady Barrows View Post
    To me the crazy idea is that rosaceans don't want to do something about this themselves and come together into a cohesive patient advocacy group for rosacea. They want the cure handed to them in a pill or topical. I have tried since 2004 to bring rosaceans together and instead rosaceans prefer and support the NRS with donations. RF has dwindled to a handful of posters compared to years ago when hundreds posted (Members: 38,189/Active Members: 144 as of this date today) not to mention the 1300 plus members of the RRDi who are basically silent when it comes to posting.
    Brady,
    Don't ever underestimate the number of people who have been helped by this Forum. You probably don't hear from a lot of the members because they pop on, read some helpful advice, are helped, and move on their way. Many cases of rosacea are mild or moderate and can be adequately helped by conservative treatments such as prescriptions offered by their dermatologists. Some people with subtype 1 will simply maintain with metrogel and will never have the need to search for a better treatment. A lot of the regular posters on here are the ones who have really suffered, really struggled, and unfortunately are still struggling. I had never gone on the NRS before so I just checked out the website and its full of pharma advertisements and big flashing banners saying "donate now!" LOL!! I think rosaceans would love to come together in a cohesive group, and by donating to the NRS they think they are doing that. They have no idea how the NRS spends their money. The ones who are not helped by conservative treatments will eventually find their way to this forum and read through the thousands of posts, and that's when the real education begins. You will never know all the people you have helped. Some will come back to tell their stories and some won't, but each day I assure you someone learns something useful by reading these posts. Thank you for all you have done and continue to do

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