Since this rosacea support group started in October 1998, many thousands have officially been part of the group.

Here is just a handful of their comments.

Fri, 21 Jan 2000 14:40:23 EST

I wanted to give an update to the group… At 29 years of age, and having suffered from rosacea for 10 years, I am slowly become satisfied with the condition of my skin.

I don’t have a history of being gentle with my skin. My rosacea has never been mild. High school acne treatments left me with irritated shiny skin. I would try to scrub away the acne and later acquired broken blood vessels. When I first got rosacea symptoms I would use the tanning booth to try to even out the redness – It was long after that I learned what rosacea was (long after I had already used topical steroids to try to rid my skin of the redness).

Today, six months after finding this group I know I can reverse and control my rosacea. I do not use antibiotics or topicals. I do take vitamins (multi, B, C, thymus, flax seed, and oregano oil). I try to be religious about acidophilus, but I often forget about that refrigerated one. I don’t like taking antibiotics – I think they do more harm than good in the long run…My healing may be taking longer, but I feel it’s worth it.

Photoderm has helped so much (4 rx so far). I’m still trying to fine tune my strategy. I’m just as frustrated with the seb derm as all you suffers, but it’s getting better.

Just wanted to reach out to those of you who are at wits end. Don’t give up!!!

Kim, AOL

Date: Thu Apr 6, 2000 2:24am

I do not write that often to the group but I just wanted to let you know about my experience lately. I love this group and have been with it for a very long time. David can vouch for that. We have lost some great people (Kerry, Skylar — are you guys still out there) and have gained some wonderful people (Erin, Jim — you are a great help). I know some have been here long (Matija, Angelee, Bill) and thank you all. My rosacea can only be described as severe for the last five years. I have tried everything and basically was using Noritate and Klaron (spotting on the acne areas). I can’t use makeup or soap on my skin and I have washed my face with water for the last several years. I decided to try Linda Sy’s new trial size zinco cream and I am amazed at how it is working for me. I could never use sunscreen before (burning sensation) so this is amazing to me. I simply wash off at night with a warm towel and even the mornings seem better. I did have five photoderm treatments done and stopped for financial reasons but I feel like I have been reborn with the zinco cream. Anyone who has not tried it yet should just invest in the trial size and use it alone for a while to see if you have any results. Honest to God, nothing has ever helped me before and this is just the most incredible feeling I could cry. I hope this lasts because life has never looked so beautiful. It’s only been three weeks so far and I just ordered the full size. God bless and I pray we all find our answer out there. Dr. Sy, thank you so much for all you have done for us.

Date: Mon, 17 Apr 2000 13:55:28 EDT

Hello,

I lost the email that asked the questions about photoderm….anyway here is my experience…I have done 7 full face TX’s…85% reduction in overall redness/pinkness. I had extreme redness and flushing…I looked like Dr. Nase but add my forehead in too! I tried so many cremes, scripts and every other concoction known to man and nothing would get rid of the redness. I felt hopeless and couldn’t imagine living the rest of my life with my face blood red and burning pain constantly.

Photoderm has been the only TX that I can honestly say has improved my condition…I still flush if I get really overheated or super stressed so I am careful to avoid these two triggers and all is fine. I would encourage anyone that has rosacea this bad to get photoderm done by a good doctor. This is the hard part…my doc was not so experienced like Dr. Bitter but open to all my suggestions and since I couldn’t afford (money or time) to fly or drive great distances to be treated I took my chances and I have no regrets.

Also, yes all doc’s have you sign that scar disclaimer prior to TX…I was also upset by this at the time…but rosacea and it’s progressing deforming nature propelled me into taking a chance…fear of PD or living with the fear of progressing rosacea…each of us must make our decisions based on what is good for us…PD was a God send right from the Throne of Glory!

Darlene, AOL

Date: Thu, 22 Feb 2001 10:25:28 -0000

Hi All,

Warmed my heart to see all the posts that my message triggered. Here’s to living life to the fullest of our abilities regardless. You are all an inspiration to me and I hope especially to new group members learning to cope with all this. This is a lovely group.

Linda

Date 11:51 Feb 26 2001

I just want to say that I am constantly amazed by the posts by group members. The inspirational stories to lift the spirits; the kind and caring replies to people who feel alone, scared and frustrated; the patience when someone asks a question that has been asked a million times. I get on this computer each night to see what is new and I have never failed to learn something from the posts. The kindness sometimes overwhelms me emotionally. Imagine what a world we would have if everyone helped others the way that is done here. No one would feel so alone. I thank you all for the help you give to each person in this group.

Ann

Wed, 14 Mar 2001 00:02:52 (Tue, 13 Mar 2001 16:02:52 -0000)

I have been reading these posts for a while now and the stories are all too familiar. BUT! Thanks to everyone’s exchange of info my rosacea is actually approaching a point where I can see improvement and feel able to manage it. I have been trying Linda Sy’s products and taking flax seed oil and I cannot believe the change. It has encouraged me to the point of making an apt with the dermatologist to discuss (demand!) less harsh topicals more suitable for my dry skin. After years of just assuming this was how I was going to look forever (red face, almost purple nose) I am so happy to have found this site. Thanks to all–you are giving hope and support to more people than you know.

Judith

Date: Saturday, March 17, 2001, 3:45:01 AM

Hi, I just wanted you all to know that just by finding this support group and all the encourageing email I have got, I feel better emotionally already. I can’t tell you how much it has meant to read what each one of you have written to me and that you understand just what I am going thru. I have printed out all of my emails, just so I have the suggestions close by. Thank you so much from the bottom of my heart!

Hugs
Garnet

From: SC Date: Thursday, April 26, 2001, 3:46:14 AM

I just wanted to thank everyone for support! This group is amazing 🙂 I’ve had a really bad flare the day I posted the original message, today Im feelin and looking much better. It’s nice to know that there are people out there who can relate and understand.

Thanks again!
SC

Date: Sunday, May 20, 2001, 9:26:15 AM

I’ve been a passive observer for a long time before actually “joining” and I just want to say thank you to everyone who posts with their experiences – this really is a support group and it warms my heart that people are there willing to share (even if I don’t understand all of it yet… but I’m learning!) So thank you all for your questions, answers, words of encouragement, research – everything…. there are probalby many others out there who are like me – look from the sidelines, test and try, and finally get the nerve to join and actually post. Thank you, thank you, thank you.

Katie

Date: Fri, 8 Jun 2001 05:38:40 +1000

Dear Group

Thank you all so much for being a part of this informative group. If it wasn’t for people like you I would still be listening to my derm and be in the complete dark. I am finally coming to understand, and learning how to deal with this disease. Thanks for all the info and support.

Cheers, Kristine (from The Gold Coast. Australia)

Date: Wed, 20 Jun 2001 13:36:42 -0000
Subject: [rosacea] Re: Redness

My photoderm treatments are the only thing that is giving me my life back. I have tried a million things since Nov. 2000. I thank God for the photoderm treatments I am getting. I was starting to lose my mind. I am slowly coming back. If you have any questions, feel free to email me.

Deirdre

Date: Mon, 9 Jul 2001 01:12:06 EDT
Subject: [rosacea] Re: Long term rosacea helped with photoderm/anyone?

Hi, Sharon,

You asked if anybody who had had rosacea for over 10 years, with lots of permanent red splotches on the face, broken vessels, burning, facial sensitivity, hot skin, swelling, had also had success with photoderm. I developed rosacea in 1990, and experienced most of the symptoms you listed.

I began having photoderm treatments in 2000, and my skin has improved tremendously. I am no longer red and my skin is much less sensitive. The texture has smoothed out a lot. I rarely flush, and when I do, it passes quickly. I still have papules/pustules and patches of dry skin, but these aren’t major problems. People often comment on how much better my skin looks. Overall am very happy with the results of my photoderm treatments. FYI, I had 6 full-face treatments and 2 touchups at the office of Dr. Bitter, Sr., in Los Gatos, CA.

Jill

Date: Saturday, February 16, 2002, 1:31:53 PM

Subject: [rosacea] DOING GOOD/THANK YOU

I just thought I would share how helpful you all have been. I have both rosacea and seb derm. I have been able to keep one or the other under control, but never both, till now. No miracles here, but I am back to that sun kissed look instead of the rare tenderized steak look, my face is pretty much flake free, and my swelling is way down. My nose looks normal! I have been using the Body Shop’s tea tree glycerin soap ($5) in the evenings and following it with Queen Helena’s Mint Julep Mask ($3) and then a very high quality jojoba oil form boston jojoba.com (31.71 w/s&h for 32 oz, I have used it for a month on my face and nails and have used maybe an oz). My face has settled down so beautifully. I am using no topicals at all. I am using doxycycline once a day (my eye get too bad w/o it) as well as primrose oil (15? for 30/1200 mg), borage seed oil (17.99 for 50/1000mg), non flushing b complex (11.09 30/2 per day) and ACES(20.05 for 90/2 per day) and allegra, although not necessarily for my face. I have been using Nizoral AD shampoo for my hair, scrubbing very hard and leaving it on for several minutes twice. I also have been trying to drink as much water as possible and at least one glass of purple grape juice a day. I’m not sure what did it or if I finally hit the right combination for my face, but I thank everyone here for their suggestions and wonderful support.

I am still trying to get my eyes to settle down, I actually think my sight is beginning to be affected, but I have an appointment next week and have been using thera tears to try to stabilize them. Thanks again!!

Becky