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Tricia

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About Tricia

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  • Are you a rosacean?
    Yes
  1. Thanks Dr. Brobell and Boes for your responses and I agree any testing on this theory would have to be done with safety as an utmost priority. As far as blood vessels being able tp be "zapped" by lasers. I agree with this to an extent but think there could be better therapies following a laser session that target the re-growth of vessels that inevitably occurs in that sensitive time frame between days 7-21 . Injecting something like Avastin directly in to the areas that have been zapped "may" help prevent the feeder vessels from re-forming and drastically improve the treatment. Of course it may do nothing at all or have disasterous effects but I'd sure love to see researchers look in to this. Rosacea has its own devastating effects on sufferers. I can't compare it to the threat of blindness but I do know I'd be willing to put up with some pretty serious risks if a good chance of treatment success were offered. Dan, as far as an answer your question, I have no idea but it's a good one! Tricia
  2. Hi Dr. Johnson, A belated welcome to our community as I see you joined last August. While I would certainly rather an all out "cure" be found for rosacea I think you are right that we may be able to offer better treatments sooner by focusing on "maintaining symptom control." I'm just curious if you're now able to share your idea with us. Any new thoughts? Thanks so much for participating! Tricia
  3. There was a very interesting article in the November 13 issue of Forbes magazine. It talked about breakthrough treatments for macular degeneration which in the its severe form is abnormal blood vessels leaking fluid in the back of the eye. One drug called Lucentis halts blood vessel growth when injected in to the side of the eye. In two large scale trials it stopped vision loss in 95% of patients which researchers are calling miraculous. Some doctors are using Avastin with great success. This is the cancer treatment form of the drug and is currently on the market and which insurance will cover most of the price. Not only is this good news for rosacea sufferers with eye problems but it has great potential (in my mind) as an overall solution to prevent blood vessel re-growth in any area of the skin. If it can be injected safely in to the eye, why not the cheeks or nose? How great would this therapy be to use after laser treatments? This is the kind of testing I'd like to see done. Is it possible to get a study started in using tese types of angiogenesis prevention drugs to complement exisiting rosacea therapy? The drugs are already on the market so it seems the next step og implememting a study wouldn't be too difficult. Although what do I know? What does the board think? Tricia
  4. I agree, adding positive input is much more productive than just putting down someone else's idea. Although I hope you are not taking my criticism the wrong way as I really think the discussion was good as a whole. Feedback was asked for and honest opinions were given. I think this board is great that in that everyone can offer their ideas in a safe environment. What would I like to see researched? 1. Things that slow down or stop blood vessel proliferation. There are already drugs like this on the market for cancer and to a smaller effect some antibioitics. i'd love to see a study set up to see if these can contribute to the effectiveness of laser treatments and/or if new topicals can be created to target just the facial area to provide a one two punch. Zapping the vessels first and then preventing them from coming back would be huge! 2. Anti-flushing creams? Anyone? There are ingredients out there that supposedly constrict vessels like caffeine, green tea and whatever the heck the magic Sans Rosa potion is. Has there ever been any experimentation with creating a rosacea friendly cream that stops and/or prevents flushing? It would be great see some experimentation with this. 3. Laser/IPL effectiveness for different sub-types of rosacea. Which ones work better for the sever flushers? Which ones for acne? Are there important steps that patients should take for a more effective treatment (like pre-flushing and is it really necessary to not flush for the first 2-3weeks post treatment?). Are we missing the boat by not developing lasers targeted specifically for rosacea? 4. Anti-inflammatories-there are some exciting new drugs out for Psiorsasis (I know I completely butchered the spelling of this). Are there some we can piggy back off of and taylor more for rosacea? Might be fun to find out. Just a few thoughts.
  5. First of all Brady, I would like to second Rick's comments on the work you've done to create this forum and bring on such a qualified Mac Board, truly remarkable! I guess I'm more than a little bit disappointed to see this study move forward though because I think that after all the time and money spent putting it together and running trials, the end result will be much of what we now already know. Which is to say that some people get affected by some foods and some don't, with varying levels of severity. Me personally, I can usually drink red wine, eat spicy foods and tomatoes with little ill effect unless I'm starting from a point of where I'm already flaring. In fact, sometimes I get pale after drinking alcohol because it relaxes me. Put me outside in direct sunlight for 15 minutes and/or in a warm room and that's a different story all together, with immediate flushing occurring. Others have a much different reaction with food but it usually depends on the individual as to what types cause a reaction or how many other triggers they've experienced throughout the day. Or maybe it's allergies or maybe there are even some psychosomatic factors involved. And to make things even more complicated it could take several days for a reaction show up so you're really never going to know for sure what cause is having an effect. My point is we are all so varied as to what sets us off (if at all)and there are so many unereliable factors involved that I think a study like this is doomed from the start and the results will not move us forward at all in curing rosacea or offering any type of strong relief for sufferers. Thanks for letting us offer feedback. Tricia
  6. I don't know if you want a layman's opinon or not but speaking from a rosacea sufferer's point of view I would rather not see this study take place. I think diet does play a role in inflammation and can thus help with facial swelling and acne and probably to an extent blood vessel dilation but I believe it plays no role role in the cause, and a minimal one at best in the progression of rosacea, especially the heaviy flushing type with no acne. Also, isolating study participants to those following or not following a particluar diet would be extremely difficult to do and the conclusions would be iffy at best and would probably just add yet another layer of restrictions to an already severely limited lifestyle of a rosacea sufferer. I vote to devote time/funds to gene therapy, topicals and/or light therapies that can make a hard difference in a sufferers life. Tricia
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