Diet/Lifestyle

[Guest Jenny]

I would truly like to see research done on diet/lifestyle for Rosacea. Not sure how it could/would be done but I am putting the idea out there.

My most recent research has lead me to believe that 'looking from the inside out' with Rosacea is worthy of more investigation/study/research.

Thanks

Jenny

[Joanne Whitehead, PhD]

I agree, I think diet/rosacea could be a very fruitful area of research. I'm also curious to know if there are any ongoing studies or future plans to study the correlation between rosacea and digestive disorders. I read recently that athsma has been found to be a long-term complication of an allergic reaction in the skin - somehow a dermatological immune response progresses to a chronic illness primarily affecting the airways. I wonder if a similar allergic response to something in our food (natural or chemical) could be the initial trigger that eventually progresses to chronic inflammation in the skin.

[supdawg234]

I would also like to see a connection made between diet and Rosacea. I am just wondering if something else causes Rosacea, and the wrong diet makes it worse and progressive? I think there is some connection but not sure if it is actually a cause. I am new to Rosacea, so maybe my ideas are a little off.

[SherryPiszar]

I would also like to see a connection made between diet and Rosacea. I am just wondering if something else causes Rosacea, and the wrong diet makes it worse and progressive? I think there is some connection but not sure if it is actually a cause. I am new to Rosacea, so maybe my ideas are a little off.

I've just begun some research into alternative therapies and rosacea. One of the subtopics that I am currently investigating is digestive health and rosacea. The idea is floating out there that people who have rosacea lack some digestive enzymes. This causes the organisms that eventually cause rosacea to flourish in their bodies and not in the bodies of others. Of course, this is just one idea.

Sherry

[SherryPiszar]

I would truly like to see research done on diet/lifestyle for Rosacea. Not sure how it could/would be done but I am putting the idea out there.

My most recent research has lead me to believe that 'looking from the inside out' with Rosacea is worthy of more investigation/study/research.

Thanks

Jenny

Ok, I'll continue in that vein. I'm fascinated by alternative medicine and lifestyle modification as potent preventative and curative forces that are at our fingertips. I'm glad that I'm not the only one who is!

Sherry

Ok, I'll continue in that vein. I'm fascinated by alternative medicine and lifestyle modification as potent preventative and curative forces that are at our fingertips. I'm glad that I'm not the only one who is!

Sherry

I just realized how old that post is! So, I'm going to put the question out there: would you like some research on diet/lifestyle/alternative therapies and rosacea? Would you like some research on any other rosacea-related topic? I'm at your disposal.

Sherry

[Guest]

Sherry,

There are several of the corporate members, including myself, that would love to see some research on diet/lifestyle/alternative treatment for rosacea. If you read the ASK THE MAC section about the question whether the MAC thinks this is a good idea or not, it was voted approved.

The majority of the MAC members approved it (at the time there were only about a dozen members of the MAC). Obviously the RRDi cannot sponsor any research that our MAC disapproves of, so any research grant in the final form would have to be approved by a majority of the MAC. It is a very controversial subject and if you read the responses of those MAC members who did reply to this subject, you can see that some feel it is a waste of research money.

At this point, if you want to volunteer your time on this it is up to you.

If you have doubts about spending a lot of your volunteer time on this one, you could post a question to the MAC and hopefully someday they will answer it. All the professional MAC members are very busy and have said they would devote 15 minutes a month answering our questions if they have the time. I am trying to increase the number of MAC members so that when some are busy then others could take up the slack and hopefully with a large number of physicians and health care professionals in the MAC we can tap into some good advice. Getting people to volunteer is no easy task and getting volunteer grant writers is even a harder task, but I am grateful you are posting your questions.

SherryPiszar said:

Ok, I'll continue in that vein. I'm fascinated by alternative medicine and lifestyle modification as potent preventative and curative forces that are at our fingertips. I'm glad that I'm not the only one who is!

Sherry

I just realized how old that post is! So, I'm going to put the question out there: would you like some research on diet/lifestyle/alternative therapies and rosacea? Would you like some research on any other rosacea-related topic? I'm at your disposal.

Sherry

[SherryPiszar]

Sherry,

There are several of the corporate members, including myself, that would love to see some research on diet/lifestyle/alternative treatment for rosacea. If you read the ASK THE MAC section about the question whether the MAC thinks this is a good idea or not, it was voted approved. This was discussed at this topic >

http://members.irosacea.org/index.php?showtopic=59

The majority of the MAC members approved it (at the time there were only about a dozen members of the MAC). Obviously the RRDi cannot sponsor any research that our MAC disapproves of, so any research grant in the final form would have to be approved by a majority of the MAC. It is a very controversial subject and if you read the responses of those MAC members who did reply to this subject, you can see that some feel it is a waste of research money.

At this point, if you want to volunteer your time on this it is up to you.

If you have doubts about spending a lot of your volunteer time on this one, you could post a question to the MAC and hopefully someday they will answer it. All the professional MAC members are very busy and have said they would devote 15 minutes a month answering our questions if they have the time. I am trying to increase the number of MAC members so that when some are busy then others could take up the slack and hopefully with a large number of physicians and health care professionals in the MAC we can tap into some good advice. Getting people to volunteer is no easy task and getting volunteer grant writers is even a harder task, but I am grateful you are posting your questions.

Thanks, Brady. I am happy to volunteer my time to research alternative therapies for rosacea because I do believe that they may be worthy of further investigation. If the MAC chooses to approve clinical research on one or more alternative therapies, great. If they do not, the information will remain as a resource for others to draw upon in the future. Thanks so much for addressing my question.

Sherry

[jbamford]

Sherry,

First, I think low glycemic and dairy free have proponents (articles for decreased androgen and acne with low glycemic diet- R Smith et al Asia Pac J Clin Neutr 2005:14(Suppl):S97). Two years ago low glycemic was being considered as to how to get NIH behind such a project which, I think, would be very expensive and be considered after a RTC on diet/common acne.

Second, in the postings above, I was surprised to read (Brady pos) that RRDi would not support a project not approved by (us) the MAC. I had thought we were to offer our help/knowledge or even effort but unlike other boards not recieve funding or have control of rosacean-RRDi direction.

On a third line of thinking, this one off the standard path, I wondered within your rosacean volunteer skills you might have public health/epidemiology folk and consider the possibility of (diet, the subject at hand) research expanding the concept of research beyond a medical practioner's work. As an licensed md, I feel best working within a medical framework with RTC's, IRBs and Cochrane Reviews. I'm not sure you should or need to so limit youself. It would be another large step and not be possible or even advisable, but you have already made several leaps to get where you are. Public health research methods/skills would be one starting place. Gallup comes to mind for that type of methodology.

[Guest]

Dr Bamford,

Thanks for the suggestion. I don't know the acronyms 'RTC' or 'IRBs' ? We need all the suggestions we can get!

As to approving a project (research) without the approval of the MAC, it only seems reasonable, since in the charter we mention that the MAC advises the board of directors on what research to support. If the MAC disapproved of the board's decision we might have a huge exodus of MAC members. While the charter allows the board of directors the final decision on all research sponsored by the RRDi, it would be wise for the board of directors to listen carefully to the recommendation of the MAC as a whole. The majority of the MAC members support research on diet and rosacea. Whether this ever is accomplished by the RRDi remains to be seen.

Sherry,

First, I think low glycemic and dairy free have proponents (articles for decreased androgen and acne with low glycemic diet- R Smith et al Asia Pac J Clin Neutr 2005:14(Suppl):S97). Two years ago low glycemic was being considered as to how to get NIH behind such a project which, I think, would be very expensive and be considered after a RTC on diet/common acne.

Second, in the postings above, I was surprised to read (Brady pos) that RRDi would not support a project not approved by (us) the MAC. I had thought we were to offer our help/knowledge or even effort but unlike other boards not recieve funding or have control of rosacean-RRDi direction.

On a third line of thinking, this one off the standard path, I wondered within your rosacean volunteer skills you might have public health/epidemiology folk and consider the possibility of (diet, the subject at hand) research expanding the concept of research beyond a medical practioner's work. As an licensed md, I feel best working within a medical framework with RTC's, IRBs and Cochrane Reviews. I'm not sure you should or need to so limit youself. It would be another large step and not be possible or even advisable, but you have already made several leaps to get where you are. Public health research methods/skills would be one starting place. Gallup comes to mind for that type of methodology.

[jbamford]

RTC's, IRBs and Cochrane Reviews:

RCT - randomized controlled studies (I'm not a good typist)

considered the best evidence

IRB - institutional review board - entity doing human research

ethical review, consenting, methodology approval before study begins

Cochrane Reviews (google it)

The producer of evidence for evidence based practice

Dr. Zuren has done reviews, I believe

Thanks for clearing up my understanding on RRDi innitiatives.

Studies of rosaceans, like those done by NRS, can add important information. Rosaceans suggesting their questions for eachother, then survey. "Does x flare, improve or have no effect on your rosacea? Of x, is there one item which is specifically important to your rosacea? x = dairy, etc.

While you gather $ for more rigorous studies (RCT/Cochrane level), I would bet there is much you could do with help of your members (epidemiologist, polling expert).

Apologies for not replying in a timely fashion.

[Jazmark]

Sherry,

There are several of the corporate members, including myself, that would love to see some research on diet/lifestyle/alternative treatment for rosacea. If you read the ASK THE MAC section about the question whether the MAC thinks this is a good idea or not, it was voted approved. This was discussed at this topic >

http://members.irosacea.org/index.php?showtopic=59

The majority of the MAC members approved it (at the time there were only about a dozen members of the MAC). Obviously the RRDi cannot sponsor any research that our MAC disapproves of, so any research grant in the final form would have to be approved by a majority of the MAC. It is a very controversial subject and if you read the responses of those MAC members who did reply to this subject, you can see that some feel it is a waste of research money.

At this point, if you want to volunteer your time on this it is up to you.

If you have doubts about spending a lot of your volunteer time on this one, you could post a question to the MAC and hopefully someday they will answer it. All the professional MAC members are very busy and have said they would devote 15 minutes a month answering our questions if they have the time. I am trying to increase the number of MAC members so that when some are busy then others could take up the slack and hopefully with a large number of physicians and health care professionals in the MAC we can tap into some good advice. Getting people to volunteer is no easy task and getting volunteer grant writers is even a harder task, but I am grateful you are posting your questions.

I am 14 weeks into a diet that eliminates dysbiosis in the gut. I was 105kgs when Rosacea hit me fairly hard since then I am 89kgs!!!

I have great days but still pretty bad days. Naturally a very anxious person i struggle with people looking at my face even though its sometimes hardly noticable!!

My Herbalist said that we must treat the dysbiosis over a long period of time and in return the Rosacea with the help of Doxycycline should become under control.

Im happy to share my diet and experiences so far.

Mark

[hjcooper]

I would like to see Diet/Lifestyle researched further. Some time ago I found a website indicating that hydrochlorhydria (lack of stomach acid) is frequently present in rosacea patients. Then I found another website indicating that salt is necessary in order for the body to manufacture stomach acid. I had rosacea at the time and had also been on a low-salt diet for many years. I wondered if there was a connection and began increasing my intake of salt. After several months my flushes were less & less frequent and eventually disappeared altogether.

A deficiency of salt may be rare, but there are a lot of people who have high blood pressure, or who are simply dieting, and may be on long-term low salt diets. It could be the cause for some people.

[Flash]

Hi everyone

I'm new here. This makes interesting reading. Thankyou.

I'm very interested in the link to diet and digestive function with rosacea. Along with rosacea, I have trouble absorbing B12 (although I consume plenty) and also don't do well on refined carbohydrates and gluten. i've just begun topical treatments although all my instincts tell me the problem lies within.

Re: salt

Think this is only relevant to some as you've suggested. i like salt and consume too much. i'm not familiar with dysbiosis Mark and will go research after I log out from here, so I can understand better. Doxycycline is an antibiotic isn't it? how long do yiou take that?

Thanks,

Flash

[Guest]

Yes, doxycycline is an antibiotic derived from tetracycline but is used instead as an anti-inflammatory rather than as an antibiotic. Here is a link that explains it better than I can.

Hi everyone

I'm new here. This makes interesting reading. Thankyou.

I'm very interested in the link to diet and digestive function with rosacea. Along with rosacea, I have trouble absorbing B12 (although I consume plenty) and also don't do well on refined carbohydrates and gluten. i've just begun topical treatments although all my instincts tell me the problem lies within.

Re: salt

Think this is only relevant to some as you've suggested. i like salt and consume too much. i'm not familiar with dysbiosis Mark and will go research after I log out from here, so I can understand better. Doxycycline is an antibiotic isn't it? how long do yiou take that?

Thanks,

Flash