 |
Galderma has created a major publicity campaign around the idea that the burden of suffering from rosacea is bigger than many doctors appreciate. The campaign seeks to create an expectation that all rosacea sufferers ought to reach a self declared `clear’ of their rosaea symptoms, promoting the idea that unless rosacea sufferers are able to achieve a clear status, the burden remains unacceptably high.
Here is what the Rosacea: Beyond the visible is all about.
We have looked into how far the burden of rosacea really extends
A survey of 710 people with rosacea and 554 doctors has revealed valuable insights on the invisible impact of a visible disease for the patients and the community. It is time to fight back against stereotypes and talk openly about rosacea burden.
…
It’s time to act on the burden of rosacea.
For more than a decade we have known that rosacea has the potential to harm many parts of people’s lives. Our skin is one of the primary ways we connect with those around us. Fairly, or unfairly, our faces are considered a representation of our inner selves. Is it any surprise then that people with rosacea can be very seriously affected?
One headline worthy claim is that 50% of rosacea sufferers would trade 6 months of their life is be cured of their rosacea. Indeed someone with a high Dermatology Quality of Life Index (DLQI – a large negative impact on their daily life) 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.
Every second patient reported that they would potentially be willing to trade 6 months or more of their life to cure rosacea.
Additionally, over half of those who have worked at least one hour in the past 7 days (55%) admitted that their health problems have impacted on their work productivity
This is an incredible statistic. The burden of rosacea is surely underappreciated given the prevalence of this view.
So, how to improve?
The `Rosacea: Beyond the visible’ promotion offers little in terms of actual treatment advice, suggesting only that if monotherapy is unable to clear rosacea symptoms, a combined therapy may offer more.
With a visible disease like rosacea, treatment satisfaction is based on how people see themselves.
This means improvement, or even regulatory success defined as ‘clear’ (IGA 0) and ‘almost clear’ (IGA 1), may not be enough to relieve the burden on people’s lives: ‘clear’ (IGA 0) should be considered the ultimate treatment goal.
However, even when treatments work perfectly in getting someone to ‘clear’, it can take a while for a person’s self-image to adjust to their new reality. It is vital to keep connected with people throughout their journey. Treatment goals in combination with a fast-acting treatment can encourage people to stick to their therapy and help them recognize their own progress.
Although we can’t yet promise ‘clear’ to all people, current treatments are now getting more people to ‘clear’, with combined therapy or even with monotherapy.
By aiming for ‘clear’ (IGA 0) we can help free more people from their rosacea burden.
Setting the bar high – hooray
Many rosacea sufferers will applaud the efforts to set the bar high for clearing their rosacea symptoms. Anything less than clear is simply not acceptable for the majority of rosacea sufferers.
The recently updated guidelines for treating rosacea are offered as some hope for rosacea sufferers, highlighting that by treating multiple symptoms at one time a more rapid success can be achieved.
Read More: read the full PDF report here: Rosacea: Beyond the visible. The report was sponsored by Galderma.
I think the bar should be set high. Rosacea is most definitely affecting people’s lives more than doctors appreciate. Nearly every time I’ve left a doctor’s office to see about treatment for my condition, I left with the feeling that he or she simply did not give a damn. This is likely due in part to the fact that they felt there was very little they could do for me, and also in part because rosacea is not life threatening (unlike other common skin ailments, like skin cancer, for example). The problem with that attitude, though, is that doctors are failing to recognize the severe psychological impact that this condition has on some of us.
Before I had IPL (which helped my rosacea tremendously, by the way) I lived in a constant state of anxiety about how I looked. I never wanted to leave my home, never wanted to eat, read, write, or do any of the things that had previously given me such joy. I didn’t even care if something happened to me and I died.
It might sound dramatic, but the way I saw it, I was 26 (I’m rather young to have this condition in the first place) and my life was already basically over. I would never be able to go anywhere or do anything without worrying about whether or not my face would start to flush and burn out of nowhere ever again (those were my two main symptoms). Not only was having a burning face for no apparent reason extremely embarrassing, but it was also terribly uncomfortable for me. Often the burning sensation would last several hours, and as I said, it would often come on randomly with no explanation. By that point I was unable to think about anything but my face, and usually I wanted nothing more than to crawl in a hole and not come out until it was over. Of course, people would assure me that it wasn’t as bad as I thought, but having had clear skin before, I knew that they were wrong. The fact is that I was never going to feel comfortable in my own skin again until I saw some sort of improvement. Hence, I decided to take the plunge and opt for what many call a “drastic” last resort in treating this condition: laser.
Side note: I don’t think laser is a drastic choice of treatment, nor should it be seen as a last resort. Of course, many will disagree with me on that, but I truly wish that more dermatologists would make learning how to treat rosacea with laser and light based therapies a priority. That way they will have more options to offer us than Mirvaso and Rhofade (both of which are the biggest jokes of all time, in my opinion).
Even though IPL has made me far happier and, frankly, given me my life back, my rosacea is not cured, and it is undoubtedly something I will continue to think about and stress over for the rest of my life. And I know there are so many others out there who, like me, are battling this socially crippling and mentally draining condition. I really think it’s time they raised the bar on finding a solution for rosacea, and I’m happy to see they are at least considering doing so. Here’s to hoping…
I understand your emotions completely Katherine. I have suffered from Rosacea since I was a teenager and I am now 66. It’s just as embarrassing now as it was all those years ago and I would say that in many ways it shaped me as a person (shy and withdrawn) and steered the choices that I made and that the direction that my life took. In saying that I do have a wonderful dermatologist who has helped me tremendously (IPL every two months, Akamin tablets when the burning and redness won’t ease ( I have a reaction to Doxycycline), various prescribed creams that help my skin such as Dalacin T, Soolantra and Rosex as well as use of Cetaphil products which my skin loves. Also I use La Roche Posay BB 50plus foundation).My dermatologist is very keen to understand more about the psychological impacts of Rosacea and agrees that it is a very underestimated result of the condition. Good luck with your treatments.
Couldnt agree mote
Katherine, I’m right there with you on so many levels. I even had to graduate from IPL after many years to V-Beam which is even harsher in order to get the same results. It’s maddening and humiliating.