Re: Incurable Mind of Exfoliative Cheilitise

Well that's a nice sentiment but to be blunt I'm a few years past that positivity psychology cognitive behavioral therapy approach to addressing exfoliative cheilitis. You see that approach with every disease. Just because you can fix exfoliative cheilitis from licking/picking or from removing an allergen does not hold true to others....not at all & I'd argue that does a lot more harm than good as it's quite a bit invalidating & I cant imagine someone telling someone else suffering from cancer those things without getting a swift smack.

Can you show me anyone who cured their Exfoliative Cheilitis who had similar circumstances to my own? Until then I dont believe this problem is curable/treatable & sadly there's no reason why I should. Some people report having E.C. "on & off" & I dont really believe they have the same condition as I do. I have not had a single "off" day of E.C. for 6/7 years. There are many people on this website who quite frankly I dont believe. There needs to be distinction between those who's exfoliative cheilitis comes from picking/licking, those who have an allergen, those who's exfoliative cheilitis "comes and goes" and "flares up" versus those people in my boat who had very stark events occur & then have had full on unrelenting exfoliative cheilitis / have been diagnosed by a medical professional who KNOWS exfoliative cheilitis which I'd argue 90-% lf dermatologists do NOT know & it's more oral pathologists which are very hard doctors to come across & even many of them dont know E.C. - so even if you claim to me that people with "exfoliative cheilitis" have been cured... that doesnt mean much as they might not have even had exfoliative cheilitis to begin with & people can easily be misdiagnosed/falsely diagnosed, claim they have this problem fasely, or have this problem but under completely different circumstances such as licking/picking vs alllergens vs my scenario. What happens when the cause of your E.C. cannot be cured or removed like stopping licking lips/picking or removing an allergen? well I fear the answer is dark & hard to accept but people will be quick to be blindfully optimistic, eager to fix health with things which they feel are in their control (foods, exercise, vitamins, optimism). I dont see this style occuring as much with pemphigus vulgaris or lichens planus.

I think any hope for improvement in my E.C. have to come from dealing with the events which came right before which were (1) open nose surgery with enera anesthesia (2) post-bite IMOVAX rabies vaccination. If those 2 events are not considered I am confident I will never be adequately treated let alone cured.

This website is clustering the symptom of Exfoliative Cheilitis together but E.C. can be a result of anything...allergy to something, picking/licking, & the uncharted waters like bacterial infections, Antibiotic resistant bacterial infections, post Acne medication changes like isotretinoin, viral disease, maybe some nerve disorder, nervous system disease, immune system dysfunction, autoimmune disease, keratin dysfunction, genetic dysfunction, cancers, gland dysfunction & tons of other scenarios. it's not a good or hopeful scenario to be in. It would be far better if Exfoliative Cheilitis was a cancer as it would be seen as more dire & doctors would pay more attention, research, awareness but I fear that will never happen. if people do suicide because of exfoliative cheilitis it needs to really be heard by the medical community & not brushed off as paychiatric medication being the cure...there is too much neglect with this condition. It's a bad situation as it stands.

Down the line suffering from this forsaken condition is hell & the surrounding issues that arise living with this condition such as facial dysfigurement, discomfort, difficulties in basic bathing due to exfoliative cheilitis' problems with water so showeing, brushing teeth, flossing, washing hair, shaving, drinking water, getting a diagnosis, dealing with doctors, insurance, retrieval of medications, finances, medication side effects, family, friends, general people of the world, emotional mental crap, suicidalness, discomfort, nutritional deficiencies, fluid intake decease, potential emergencies/hospitalization due to nutritional deficiencies & fluid intake changes, facial dysfigurement, social phobia which has a tangible source aka facial dysfigurement, & the loss of many life conditions such as dating, friend making, marriage, children, job and career opportunities, for some people reorting the exfoliative cheilitis to VAERS, suing vaccination company, being believed by doctors,the hell that is keeping records of this condition by taking daily pictures/videos, there is a neverending list. This condition is a living hell. There was a tornado warning in my area on a loudspeaker & I was told to go to my basement & before thinking about bringing food or water I thought about bringing something which would partially ease my dry lip discomfort like vaseline (as my lips dry & literally rip into bloody cuts without some sort of emollient but the emollients always take the skin entirely off my lips after some hours) & surgical masks to hide the dysfigurement in case of emergency.....that is how horrible this shitty condition has become in my life.

I'm 6/7 years in. This problem first came when I was a senior in high school at 17 years old...if I got this problem when I was 60 who knows how I'd feel. I can say it has done unfathomable damage to my life & me as a person. Even if I were 100% cured tomorrow the damage this condition has caused could never be remedied. I could win the billionaire lottery & still the damage would not be changed. In my scenario I can state that as long as I have this condition my life can never be whole & while I can be content with filling my life with video games, tv, & dogs so long as I have this condition I will never be "happy" & there is absolutely nothing on this planet which would change that short of hell a lobotemy...if you could even call that state of living "happiness".

I guess to feed your positivity I am not 100% hopeless yet as I am travelling to Maryland in 2 days to try another doctor. Someone on this website claimed this doctor cured their exfoliative cheilitis so I am going to try it. I am going to take pictures tomorrow of my lips before treatment with this doctor. I will post everything on a website I've had tracking this condition. If I were 100% hopeless I wouldnt bother travelling to this doctor & that show "monsters inside me" does give me hope that people can be damned for years but one moment can change their life - but thats just being positive & neglecting the many more counter points/negative points which could be said in response.

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