Kirsten’s Rosacea Story

Written by on June 16, 2016 in My Rosacea Story with 1 Comment

Rosacea News is starting a new series of articles that I’m calling “My Rosacea Story“. There is real power in hearing other people’s stories. We’d love to hear from you too. Feel free to send me an email, and to use the following questions as a starting point.

Thanks to Kirsten for sharing.

How long ago, and how did you discover you had rosacea?

I found out that I had Rosacea about 12 years ago.

What feelings can you remember from when you first found out?

When I first found out that I had Rosacea I was pretty frustrated and looking for anything that would help.  I found the National Rosacea Society online and started following their suggestions.  I also donated to them.  Many of their resources are helpful.
I was also frustrated because I have other autoimmune diseases.  Like I said, I have Sjogren’s, which is like Lupus, and I have Migraines, which I understand can be related to Rosacea, and I have Geographic Tongue. Some days I am just one inflamed and at times burning individual which is not fun.

What did you start doing to find relief?

I found some relief when I figured out that I really need to avoid the sun and some indoor lighting.  I purchase sun protective lotions and clothing from a catalog, Coolibar, and always have an umbrella or hat when outside.  I even wear a hat when shopping in some stores that have sky-lights or bright lighting.  Even a small amount of sunlight will cause the Rosacea to flare up and I will have red, bumpy, itchy, burning skin.
I also found some relief when I figured out that heat causes the Rosacea to flare.  So I installed air-conditioning in my home, use fans at work to make my office a little cooler, and I purchased some “scarves” that I can dampen and wear to cool down when outside and it is hot.
I also figured out that I cannot eat hot spicy food… my face will burn for hours after and is so painful that I cannot sleep.
Anger and anxiety are also things that send my Rosacea into a flare.  This is the most difficult thing to avoid… but I still try.  I try to tell my self that I just can’t let anger and anxiety get the best of me or I will pay for it with my face burning up and painful for at least 3 days.

What things did you try that didn’t help?

Some things that didn’t seem to help are the RX’s from my doctors.  They are irritating to my frail, dry skin and seem to make it worse.

What things did you try that did help?

As I recall, I think it was Noxema that actually helped. I know that I used Noxema for years because it helped my skin.

Where did you find the best advice?

I think I found the best advice online… from the National Rosacea Society and from your site and the news letters that you email out.

Please tell us what advice you would offer newly diagnosed rosacea sufferers?

I would recommend people look at the National Rosacea Society site and your site and try the recommendations to see what helps them personally.

What hopes do you have for the future for yourself and for rosacea sufferers in general?

I hope that in the future, someone will find out what causes Rosacea.  And I feel that there is more than one kind of Rosacea and that it is caused by a variety of different triggers.  And most of all, I hope that this knowledge will provide some relief from the reddness, bumps, burning and itching, that in me case even keeps me awake at night when my skin is all flared up and red.
Also, just a note, I am almost 70 years old with very fair skin.  I have always avoided the sun because it hurts my skin and my eyes.  And even when it was hot, I ususally have lots of clothes on as I discovered it is insulating and  actually keeps me cooler when done just right.

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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1 Reader Comment

  1. Comment via email from Gail.

    “Thank you. I enjoyed her story. It is nice to know one is not alone in this experience, although sad, as well, that another person is experiencing the distressing and life-style altering effects of Rosacea too.”

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