 |
One of the startling outcomes of some research into the true burden of rosacea is just how much life expectancy a sufferer of severe rosacea would be willing to trade for clearance of their symptoms.
The study which was commissioned by Galderma has unearthed a striking statistic -many rosacea sufferers who say that their quality of life has been severely affected by rosacea would be willing to trade a year of their life for relief.
The study tells us that “someone with a high DLQI is more than twice as likely to report they are willing to trade a year or more of their life for a rosacea cure, compared to people with low–moderate DLQI.”
Additionally we know that some rosacea sufferers put a high dollar value on ridding themselves of rosacea.
What is happening here?
This is a major concern, the burden of rosacea is something that cannot be ignored.
The desire for clearance is high and the overall treatment satisfaction level is low. Herein lies the problem – there is a gulf between what rosaca sufferers are looking for, and are finding. Until that gulf is crossed there will continue to exist a body of rosacea sufferers frustrated and constantly on the look for something better than they can find.
Can you imagine it?
Can those who don’t suffer from rosacea hope to understand how you feel? Isn’t rosacea just teenage pimples?
Feel free to have a rant below and let everyone know how rosacea makes you feel !
I’d give anything to be able to go out to dinner or have a meal at a friend’s house. The number of triggers I’ve got is astonishing–all dairy, all nightshades, anything with histamines–you name it!–and each trigger episode puts me through hours of burning/stinging & leaves dark red marks that can only be alleviated with expensive laser treatments. Then there’s the buzzing/tingling spot between my eyebrows… I’d happily give two years of my life to get rid of this!
I agree with Allison – I’d happily double the initial choice of 1 year to 2 years to be rosacea free….a small price to give so as not to sufferer from it’s many symptoms ever again!
2 years ago I would have said 10, I’ve now cut out sugar, wheat and dairy, I’m on a low carb diet and feel much better,no burning or stinging now. Everyone should try this!!
Neil, I think you are right to say that diet is important in treating this disease. I have been following the 5:2 Fast Diet for several months and have noticed less flushing episodes. As part of this diet I have reduced my intake of sugar, bread,pasta and rice. I still eat dairy, mostly cottage cheese and Greek yoghurt. I have lost weight, have less joint pain, less hay fever and less flushing. I still follow my rosacea treatment regime of trigger avoidance, daily sunscreen use, regular laser treatments and the use of rosacea specific skincare. A change in diet is definitely worth a try!
Comments via email.
“Hi David. I am a 64-year old man who was diagnosed with Rosacea back around 1981 or so. I have struggled with it off and on since that time. In the last year I have gone to a ketogenic diet (eliminating most notably gluten, i.e., flour, bread, pasta, etc.) and I also do daily intermittent fasting (16/8). Suffice it to say, rosacea is no longer an issue and I have stopped using Metrogel, doxyclycline, etc. Aside from some mild redness, there are no inflammatory issues, i.e., papules and pustules. In my case at least, I think it is all about systemic inflammation. ”
“People with rosacea have low levels of potassium and niacinamide. Taking those supplements helps. So does using a niacinamide lotion. Rubbing alcohol dries them up on the nose. CBD salve also helps. People with this problem have low immunity so it is unwise to take antibiotics doctors try to push on them. Turkey tail mushroom or seven-mushroom blend helps with immune deficiency. Should I even mention a pure, healthy diet?”
Comments via facebook.
“As a sever sufferer I wouldn’t give up my life, I value life too much. However I really, really wish there was an easy solution to curing & ridding myself of it. I hate what it does to my face, & what it is starting to do to my eyes. ☹️”
“I would give the whole rest of my life just to look good in my coffin! ”
“Id happily give 10! ”
“I’d consider it!!”
I would give 10 years! I also value life, but rosacea ruins almost all pleasures of life: sociability, family meetings, certain meal, initiatives at work, intensive sport, holidays (no ski in winter and not much sun in summer)..
“True. I remember an old post on here, quite some time ago, where people shared how many years of their lives, or what limbs, they were willing to trade for a rosacea free life. I happily give up ten to fifteen years of my life to get a healthy body.skin back and more thoroughly enjoy life, instead of being housebound”
“Wow! I was just saying to my partner I would gladly give 10 years of my life to be rosacea-free Nat, and I am older than you!
J x”
“Yes! Take a year off! Skin issues are the worst.”
What an awful bargain! I think I have, in fact, taken years off my life seeking a “cure” when the dermatologist prescribed antibiotics. They not only tore up my gut, but the drastic change in bacterial colonisation led to colon polyps—something unheard of in my family. Besides—antibiotics won’t “cure” a thing and the rosacea returns.
Another thing to absolutely avoid is hydrocortisone in any form. This may be tough for asthmatics, but it can be done. I do better with occasional use of a rescue inhaler, the stronger version of the flu vaccine, and prompt use of zinc lozenges at the hint of upper respiratory symptoms. Also, a lovely benefit of regular swimming has been less rosacea and less asthma. Go figure.
The main stay for treating my rosacea: #1. Get a ClearRayz Blue LED Light. It’s The Best treatment I’ve found. #2. Dermalogica makes “Breakout Control mediBac clearing” solution. For me, finacea cream is too caustic and metronidazole gel is worthless. #3 I spray Colloidal Silver mist and allow it to dry. Hylunia makes a nice colloidal silver spray with lavender, which is said to calm the skin. Colloidal silver is used as an antibacterial agent in wound-healing.
Cerave PM is a good moisturizer, which is important for moist wound healing. Sunscreens bring out my Rosacea, so I avoid the sun and always wear a broad rimmed hat.
I would like to know if anyone would give up their sex life to get rid of acne or rosacea – especially if you were still a teenager? What about giving up everything you enjoy including not getting any joy from listening to music?
https://www.ema.europa.eu/documents/psusa/isotretinoin-oral-formulations-cmdh-scientific-conclusions-grounds-variation-amendments-product/00010488/201611_en.pdf