I first joined curezone in 2009 aged 20, now Iíve recently celebrated my 28th -- and guess what, I still have EC! This horrible disease has plagued my life since I was aged 12 and has never gone away since. Unfortunately Iíve had this condition for almost 16yrs and YES I have suffered from severe depression and it has affected my social life (it could even be argued whether I have one) a lot.
Iíve been managing my EC with scissors and Vaseline. The large crusts or keritinization that forms, I just simply carefully remove with scissors. I remember telling a doctor this once and she gaspedÖ telling me thatís dangerous Ė well duh! But thankfully I have rarely cut myself cus Iíve been doing it for so long. I usually carry my scissors and a mirror with me nearly everywhere I go.
Iíve been going doctors ever since I was a child to cure this EC and all these so called professionals have been useless. Thank GOD I live in the UK and we have the NHS. Imagine having to pay to see these medical professionals and pay them to try things that only make things worse Ė yikes!
Recently I was having dinner with my father and he said, that the problem with me is -- cus Iíve had this condition for so long Ė Iíve become accustomed to it. I no longer actively try and find a cure. He had a valid point and the penny dropped. It was at that point I re-joined curezone and Iím going to try and find a cure for my EC.
With that being said, I wanted to hear other peopleís opinion on the fact we constantly use our mouths for eating and speaking day to day. Iíve noticed that my peeling cycle is slower when I talk less or eat more slowly/carefully. Maybe small day to day activities cause mild trauma. Where normal lips can withstand laughing lots/eating which involves lots of mouth movements and constantly speaking. Maybe EC suffers because they donít have that protective barrier, the lips are more prone to peel.
Daniel I have followed you for years. I have had EC almost 16yrs and still not managed to cure. I think you have dedicated a lot of your time to people to help them. And honestly I see nothing wrong with expecting a little something $ in return.
I think when I'm dedicated to following a strict EC cure journey I would definitely subscribe and pay a monthly subscription.
"For me the wet/dry border of the lip becomes inflamed right as the start of the peeling cycle and causes a sort of air pocket or blister to form right at the inner border of the mouth which slowly spreads inflammation to the rest of the lip"
The "air pockets" what you mentioned which I thought was interesting I believe speeds up the inflammation process. From my experience, when the crustation cycle starts to begin it usually starts where there is an air pocket.
In my 20+ years of suffering through EC. I am coming down to similar conclusions, of it being caused / related to dry mouth. The causes of dry mouth are several, like you and others have posted, so to find a universal cure might not be possible. Perhaps this is why EC heals for some and not for others even though they used the exact methods that cured one person.
On a side note, I have also tried numerous diet and I feel the same as you, paleo seems to be the most helpful.
When applying vaseline or aquaphor, make sure your lips are always moisturized and never let them dry out. That should stop the buildup of dead skin. If you see any changes like new skin developing (you'll notice it by the grayish color) then your lips are healing. Then again, there's a chance it might not work for you. It all depends on how damaged the dermis is.
If aquaphor or Vaseline fails, then I recommend you purchase Gloves in a bottle. From what I can see, your lips don't really look that bad, so Gloves in a bottle is very likely to heal you. (Mine was just as bad as Daniel Miller's and it worked for me). This product healed that white line you mentioned.
Hi there, let us know how the method is working out. I don't think EC is the result of the skin healing in the wrong expression. Lip skin is very elastic and the injury from EC is not severe enough to cause what is medically known as a "contracture" (the kind of constriction of the skin due to scarring you are talking about, which burn victims do sometimes get). I think the tightness you are experiencing comes from the dehydration of the skin , which makes it hard and prone to tearing. That said, I think there is something wrong with the wet/dry lip border in a EC (that line in your mouth which should be a smooth transition from a wet mucosa to a dry outer lip). So maybe not touching your lips together could help that heal in some way, let us know how it goes,