Who studies rosacea?

[Brady Barrows]

Here are a couple of posts on this subject worth reading:

Rosacea Research in Perspective of Funding

Rosacea Research in Perspective of Idiopathic Diseases

[kfranke]

Here are a couple of posts on this subject worth reading:

Rosacea Research in Perspective of Funding

Rosacea Research in Perspective of Idiopathic Diseases

Ugh. That's not very encouraging. Seems few people are interested in studying it. No wonder we don't have any kind of cure in the works.

[Brady Barrows]

Ugh. That's not very encouraging. Seems few people are interested in studying it. No wonder we don't have any kind of cure in the works.

We can just shrub our shoulders and do nothing or we can understand why the RRDi was formed in the first place.

[antwantsclear]

Ugh. That's not very encouraging. Seems few people are interested in studying it. No wonder we don't have any kind of cure in the works.

A lot of the best research is really by trial and error amongst a small group of expert dermatologists who see a lot of cases of rosacea. If you watch on the forum, you will find some members have had more satisfactory approaches to managing their rosacea because their dermatologist is aware of a wider range of treatment combinations that can work well through experience. A lot of these are not written up even as research case studies, however, let alone as full clinical trials.

[Brady Barrows]

A lot of the best research is really by trial and error amongst a small group of expert dermatologists who see a lot of cases of rosacea. If you watch on the forum, you will find some members have had more satisfactory approaches to managing their rosacea because their dermatologist is aware of a wider range of treatment combinations that can work well through experience. A lot of these are not written up even as research case studies, however, let alone as full clinical trials.

What do you think about rosaceans getting together and sponsoring their own research, i.e., get 10,000 members to each donate a dollar, and the sponsor a double blind, placebo controlled, peer reviewed clinical study? The other option is to keep the status quo research continue.

Someone I know was really impressed with the AAD and its research, so I did a cursory review of its Form 990 for 2015 which was supplied easily at Wikipedia and posted this if anyone is even remotely interested.

[Brady Barrows]

One of the issues that has not really been addressed in the literature on rosacea is killing mites on the scalp, which is a great site for them to live given they choose places where there are hair glands to live. Rosacea sufferers regularly say they use tea tree shampoos etc, as do I, to try to control mites on the scalp, but there is little research it seems into how to control scalp based mites. There is always a strong risk that if you only treat the scalp or you only treat the face the mites just migrate from one area to the other, ready to pounce back to the treated area when treatment stops. I think this is particularly relevant for the ears which are often directly in contact with the hair, and a popular site for mites to live in. Do you do anything to treat scalp based mites?

I use a coal tar shampoo, the Walmart version Equate, similar to T-Gel which seems to work for me. According to Megan Thoemmes, the ubiquity of the mites is quite astonishing, and in non rosaceans they are in many parts of the body causing no issues as a pathogen, and appear to have some symbiotic relationship, the mites obviously benefit from sebum, etc, and are part of the human microbiome.

In non rosaceans who have no issues with demodex, the mites are able to regulate a TLR2 response so that the innate immune system doesn’t go into overdrive and respond to the demodex, according to this study by Dr. Powell, et al. So no matter how many mites you kill, they will come back since they are in so many parts of the body all we can really concentrate on is the facial area to reduce the number to a normal count. If you have issues in the scalp, I agree, you may have to treat using some insecticide like Tea Tree Oil or ivermectin. But if your scalp is having issues, i.e, SD, erythema, dandruff, it would be prudent to treat. Probably your using a tea tree shampoo is a good idea.

[Brady Barrows]

There are very few rosaceans who want to investigate rosacea research. I have been browsing the Facebook and Reddit rosacea groups and the discussions are so shallow, ‘Is this Rosacea?’ (if you suggest getting a diagnosis from the dermatologist you are often told to mind your own business) or ‘What moisturizer should I use?’, a huge number of threads on horse paste, ‘What cosmetics should I use?’. So many rosacea newbies have so little knowledge of rosacea, basic rosacea 101, and I just don’t understand how these ones prefer Facebook or Reddit user interface over the forum style posting like RF uses. And several posters are easily offended and cut you off completely without any grounds whatsoever, and will not discuss why. Very different group of rosaceans.

If you post something about rosacea research or any deep dive into a discussion about rosacea, the posts are mostly ignored and I have tried to discuss some investigative subjects with little response. RF still has some of the best minds on rosacea investigation like the ones in this thread that kfranke started. However, my pet peeve is how with all my effort I cannot get enough rosaceans together to unite in a single body to do their own research (see my post Just Venting). The RRDi members are even more frustrating since hardly anyone posts no matter what appeals I post. The future looks bleak for rosaceans ever getting together to make their own independent rosacea research.

The one bright star is possibly horse paste may finally substantiate demodectic rosacea and nail the coffin on it. The internet spread the news on how HP is just as valid a treatment, if not even better, than Soolantra, and the cost is incredibly cheaper. This will without a doubt cause a huge stir with the AAD and may cause a strict regulation of veterinary treatments with pressure on tighter controls in the USA. But the benefit will be more research to establish once and for all what the long term effects of using ivermectin for rosacea are.

[kfranke]

There are very few rosaceans who want to investigate rosacea research. I have been browsing the Facebook and Reddit rosacea groups and the discussions are so shallow, ‘Is this Rosacea?’ (if you suggest getting a diagnosis from the dermatologist you are often told to mind your own business) or ‘What moisturizer should I use?’, a huge number of threads on horse paste, ‘What cosmetics should I use?’. So many rosacea newbies have so little knowledge of rosacea, basic rosacea 101, and I just don’t understand how these ones prefer Facebook or Reddit user interface over the forum style posting like RF uses. And several posters are easily offended and cut you off completely without any grounds whatsoever, and will not discuss why. Very different group of rosaceans.

If you post something about rosacea research or any deep dive into a discussion about rosacea, the posts are mostly ignored and I have tried to discuss some investigative subjects with little response. RF still has some of the best minds on rosacea investigation like the ones in this thread that kfranke started. However, my pet peeve is how with all my effort I cannot get enough rosaceans together to unite in a single body to do their own research (see my post Just Venting). The RRDi members are even more frustrating since hardly anyone posts no matter what appeals I post. The future looks bleak for rosaceans ever getting together to make their own independent rosacea research.

The one bright star is possibly horse paste may finally substantiate demodectic rosacea and nail the coffin on it. The internet spread the news on how HP is just as valid a treatment, if not even better, than Soolantra, and the cost is incredibly cheaper. This will without a doubt cause a huge stir with the AAD and may cause a strict regulation of veterinary treatments with pressure on tighter controls in the USA. But the benefit will be more research to establish once and for all what the long term effects of using ivermectin for rosacea are.

Brady,

I am all for participating in independent research. Trouble is, I wouldn't even know where to begin. While I certainly know more about rosacea than the average person and (I daresay) some dermatologists, when I consider doing research on my own...well, it just feels like that would be way over my head.

Trust me, no one wants to solve the problem of rosacea more than me. And I agree, not many people seem to want to dive too deep into rosacea research (again, including dermatologists) and I too find this to be immensely frustrating.

What would you suggest to be a good first step in making more rosacea research happen? I suppose we would first have to find a group of rosacea patients suffering from the same symptoms that are willing to participate in trialing something.

Believe me, you aren't the only one fed up with no one taking this seriously.

Edit: Also, I'd be willing to donate way more than 1 dollar to such a cause.

[aafdup]

People with no desire to actually cure it, or find a cure. Just keep raking in the 'research' money. As long as it's considered by the majority to be a cosmetic nuisance rather than a disease with serious implications, such as psychologically (impact on quality of life, suicide, etc.), there is no need for these companies to really find a cure as long as they can keep raking in the cash by coming up with pharmaceuticals that not only mask the issues but eventually make them worse on their own.

If rosacea happened to say, literally start burning your face off over time - you bet there'd be a cure for it by now.

[Brady Barrows]

I have done my best to bring rosacea sufferers together into a non profit organization for rosacea patient advocacy and to sponsor their own research. Rosaceans deserve what they donate and it sure isn't the RRDi. Enjoy the NRS who received in donations over the past twenty years $14,828,376 and spent about 10% of this on rosacea research ($1,477,474). Where was the rest of the money spent? Rosaceans could care less about any of this.