Re: Just to Clarify

I have to back up Healing2021 here. Their skepticism is healthy, and sadly, a major impediment to curing our condition lies in the naming of the condition itself. Exfoliative cheilitis means inflammation of the lips with desquamating skin, something I don't doubt Vunk, lilo, and jsl123 among many others have. I myself have been diagnosed with exfoliative cheilosis, which is the same but without inflammation. Now somehow this naming issue leads to countless idiotic dermatologists prescribing steroids for a non-inflammatory condition. You can't say people without inflammation or redness around the lips have ezcema, in my opinion, but I'm not a doctor.

This group is for sufferers of peeling lips including those with EC. There are a ton of reasons for chronic peeling lips, aptly summarized here: http://www.doctoroz.com/blog/audrey-kunin-md/many-hidden-causes-chapped-lips
How many people at the end of their rope, considering surgery or immunomodulating creams, have eliminated all these possibilities? While some folks certainly have HPV and herpes (I have both in a dormant state, and never manifesting on my mouth), there is absolutely no basis for saying that this is the cause of everyone's condition.

With this curezone group, we have the added problem of having only a handful of people willing to post pictures and describe everything they can related to how they might have gotten the condition, so we can adequately compare our condition to others with the same etiology and symptomology. The vast majority of sufferers here don't want to participate in the community and basically lurk, hoping for guinea pigs to discover the cure and stick around to prove that the cure is for real -- we see how often that happens, and when it does we have the perennial problem of not knowing all the details or not having before and after pictures to prove.

Anyone here is welcome to join the Peeling lips wiki and post their history and treatments (and some pics!). It will help us better organize ourselves under such a broad set of symptoms. I don't make money from the site, and I have a Link Exchange agreement with Curezone. There simply is no good way to organize all our information on here. I'm also going to create a wikipedia entry for Exfoliative Cheilitis with a disambiguation page for Exfoliative Cheilosis. Anyone can add to the info, I don't plan to do it alone. I'll put it on my user profile links after I get it started.

Good luck with the treatments to us guinea pigs out there, and for those suffering with the same ol' same ol', remember to always keep the condition in perspective.

Peace,
C.S.