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Re: Seb pics
 

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seb Views: 2,308
Published: 12 years ago
 
This is a reply to # 1,488,277

Re: Seb pics


Hi,

Hang on slow down a minute, I was under the impression this forum was about evidence, support and possible courses of treatment to alleviate the symptoms that accompany EC. As indicated in the threads posted earlier, you may have picked up on a couple of details:

1. I'm a 44 year old male
2. I am happily married with children
3. I've had this condition in varying forms since 1994 (29 yrs old)
4. If I smile right now, yes some of the keratin will fall off but even after soaking, both lips will bleed and infection will set in.
5. Lip balms didn't work back in 1994 and they don't work for me now.
6. I have received many types of treatment from some of the best and most caring specialists in this field. (All listed out in detail earlier).
7. I am a full time employee of the UK Government based in central London so if you define commuting into Westminster every day as "hiding in the house" then so be it.
8. The reason my parents didnít tell me how to ďfix my lipsĒ is because they are dead.

You may wish to be a little more careful with your assumptions in future. Your comments might be more constructive if they contained information that others could usefully analyse. i.e.
1. do one or both lips emit clear mucous?;
2. do you lips bond together when you sleep overnight and how do you separate them?;
3. does the composition of the crusting change with the seasons?;
4. does the condition of the lips improve in summer or winter?;
5. does hot food/drink affect the lips differently to cold food/drink;
6. do the lips show signs of improvement if you inhale and exhale through your nose rather than your mouth?;
7. do they prefer a humid or dry environment? Etc etc

I think Iím a little bit beyond the ďI use chapstick and water to rub my lips together in a kissing motionĒ stage. Sorry, I donít wish this to come across as a personal attack as it is my intention to discover similarities between our conditions and ensure some progress is made in treating the disorder. We could learn so much. Maybe Iím on the wrong forum.
 

 
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