Re: Exfoliative Cheilitis Survey

I am happy to answer the questions, I appreciate the effort you put into them. I don't want to reinvent the wheel, but I thought it would be easier to use a site that where you can view and share the data easily among participants, so I created this survey a month ago.

s[dot]surveyplanet[dot]com[slash]cYbMIQSTd
Where it says [dot] you type . and [slash] type /

Maybe the link will be blocked, but this is absolutely not an attempt to phish, spam (it can be done anonymously), or sell anyone's info. We have around 40 people who've taken it so far, and I will publish results on the Facebook group "Mutual Aid Network for Chronic Peeling Lips," as well as here, once we get a statistically significant sample of at least 50 people.

I do think it's challenging to create a good survey and am open to feedback or explaining my thinking regarding certain questions and why some have required answers and others don't. You are also welcome to join the Facebook group, and completing the survey is a minimum participation requirement for the group.

Anyway, below are my responses to your survey:

1) Winter 2006, 26 years old.

2.) Had gotten chapped lips fairly frequently in my childhood, and bit them, but never had chronic EC until 26.

3.) In fall of 2006, a lady bit my lips while kissing.

4.) No

5.) No

6.) Don't know for sure, but I believe a perfect storm of factors led to this, the rough kissing, changes in humidity, poor diet and vitamin deficiencies, use of strong Antibiotics , heavy drinking and marijuana smoking, and acute severe anxiety and chronic depression, fear of isolation, however it was the constant picking and tearing of the skin and overuse of Chapstick and Aquaphor that led to it becoming chronic EC.

7.) I believe steroids may have made things somewhat worse.

8.) No

9.) Took penicillin as a child without problems, took Z-Pac (Zithromax) before developing peeling lips.

10.) No

11.) Yes, smoked marijuana before getting EC

12.) Yes, but never got me in trouble.

13.) Yes

14.) Getting better

15.) Currently doing intermittent fasting, eating simply, anti-inflammatory diet, low carbs, no fast food, lots of water.

16.) Red at first but otherwise look fairly normal.

17.) Oral hygiene wasn't great, was using Colgate toothpaste but not flossing.

18.) Yes, picking and biting, and ripping off the skin before it was ready to come off on its own.

19.) I had just started jogging, and was doing a lot of mouth breathing when doing so.

20.) Yes, only one accident in which I was a passenger, and I survived.

21.) Started on lower lip and spread to upper lip the following year, still on both lips, but upper lip has a longer peeling cycle, and was in remission (except for upper triangle) for about a year.

22.) 13.5

23.) Moderately sociable, less so nowadays.

24.) Yes

25.) 38

26.) Born male, but I identify as non-binary.

27.) Yes, as a baby

28.) Vagina

29.) No, perhaps it is too strong?!

30.) There was a cold snap, so it went from humid to dry quickly, and fluctuated a lot. My housemate blasted the dry heat on cold days, which I believe dried out my lips.

31.) No

32.) I had panic attacks related to death and the thought of losing my family. Tweet