Since I have joined this forum I have noticed that massive amount of inactivity amongst its users. This baffles me and makes me wonder how much internaliztion of feelings are being ignored by LP suffers. Personally, for me it was a relief to find out I am not alone and I looked forward to being encouraged,along with encouraging others. This support website, along wiht others it was modeled after, is only as strong and good as it’s members make it. Although I am new to this forum, LP is not new to me and, presently I know it will be with me the rest of my life. So if I encounter any coping mechanism, I will utilize it to its greatest potential. For me quasi is a guy at Notre Dame and has no correlation with my efforts of gaining and giving support. To do something halfway is not something worth doing at all.


Same here. I can’t get anyone to help me at the Yahoo group. So I thought I’d try here but since I joined no one is responding.?
Best Regards-Beauty


Hello, I just joined myself. I don’t have many answers so was looking for some myself. Can’t say I can keep the site very active but I sure am interested. It only takes a few to keep things going right.


Hello Alicat,
You are correct and I am glad to welcome you to this forum. Hopefully, other people who have been diagnosed with LP will realize the therapuetic component of speaking to others who have also been diagnosed with LP. I am willing to share any information I come across. Somethings work for some of us, and sometimes it does not. Take care,


I’ve learned alot in just a visit or two. I do look on the internet but there’s nothing like talking to people that are experiencing it themselves.

Not only do have physical suffering but people don’t understand it.
I tell people I have this mouth thing and they look at me funny. It’s hard for them to comprehend that it’s not a virus or a bacteria and most of all that it’s not infectious. I say “auto-immune disease” and they immediately work out the abbreviations. Then I say umm no not that one. I’m likely too new at this to explain it very well. I’ve stopped saying something to most people.


Hi Alicat,
You don’t owe those people a definition or explanation. If they are truly worried about what you have, they usaually worry if it’s contagious, they would try to find information themselves. Some people, with LP are already ready self conscious about and we need supprt and they need to be tactful and understand we did not order or have it FedExed to us.


Hi Gerry, Ditto on everything you said! I’ve been trying to find this support group for a while. I am a cancer survivor as well & am on line with a website just devoted to esophageal cancer from people all over the world. I cannot tell you how valuable the experience & knowlege of these folks have been to me. I think anytime we have a “personal” experience with something, be it anything, it becomes part of our life wheather we wanted it to or not. We need the support of people who have also had to cope with the same experience. The same primace as AA. I will say as human beings, sometimes I/we don’t continue to stay involved, if all is well! Don’t we take things for granted!! Just wanted to agree with you. Sister


I just joined and thought I would hear from other olp sufferers right away----silly me. I know some people have lives and work and cant be on the internet just any old time so still will hope to compare treatments, hopes, etc. with someone out there.


The Yahoo LP site is much more active. Join that.
— roman wrote: