Posting

canada, most people with ENS who find this board follow this pattern: In the beginning they post quite a lot in a short time because they naturally want to get feedbacks about their own condition. Once they learnt everything they had to learn, they stop posting as much, and will occasionally post again every now and again, but that doesn't mean that they are not active and do not read the posts. you can count yourself that out of 205 members registered on this board, at least 130 members have posted about their ENS. However there is a core of members, around 20, that post almost on a regular basis. Those members are simply those who either find more help and support in this forum than others, and they are often people that enjoy conversing and helping others. Another thing which I don't know if you noticed, as many over-look this: Have you noticed that there is an ENS patient list to sign on on the ENS association website? have you filled in that questionnaire? That list represents the number of ENS patients that have actually signed in as members of the ENS association. Many members of this board get confused and think that if they have signed on this board they don't need to sign there, but that's wrong. These lists are separate. While I was moderating this board I used to send a welcome message to each new member here asking them to sign on the other list too. I don't know if this is done anymore. - did you get such a notice when you registered on this board? I'm not up to date on the number of members on that patient-member list, but I assume it is around 250. David has the up to date figures.

Posting
think you are right. There are more and more people entering this site, but the same people post all the time. I believe a lot of us are just feeling hopeless, as if we are a part of something that is really not helping us at all. I guess this is a normal reaction because things are very definitely moving slowly for a person suffering from ENS. I myself find I am coming to the Board less and less just to see what, if anything, new, has happened. Sometimes I get very despondent and I visit the forum; after reading the posts, I find myself more despondent and therefore stay away for a while. I definitely appreciate all the work Dr. Houser and those working with him are doing for us, but for someone suffering with ENS, we need help now. :( Valerie

PV, The only help we got up to now is help we generated ourselves and this is even more true about the future. All of us have to realize that ENS is a iatrogenic condition. This means that it is a specific condition caused by doctors. Unlike primary atrophic rhinitis, there is no such thing as primary ENS, unless there are very rare cases of babies born without turbinates.... So, the fact is that ENS is a blunder caused by doctors. That's why they don't go out their way to support us or to even admit that it exists, because it's nothing they can be proud about, and that's an understatement... But their wall of silence is slowly crumbling away through awareness to ENS. But creating this awareness is our job. No one else will do it for us. Sad ? yes! Unfair ? You bet ! But that's life and life isn't fair. If we sit around crying like eternal victims and not take action ourselves, we will never get better, and most doctors will continue to ignore us. As far as most of them are concerned - if they don't hear us then we do not exist. Every post on this forum helps a little, but what is mostly needed is ENS patients that are willing to work more vigorously towards it. Sadly, only a handful of us have actually volunteered to do something more substantial like: writing the ENS website, the Wikipedia article, helping doctor Houser with research, writing and publishing a book about how it is to live with ENS, sending in a short video recorded interview/-*test*-('")imony of one's personal ENS story, or even picking up a phone to David to ask him what can I do to help increase public awareness to ENS? How many of us have actually done any of this? I can tell you now - 3. I'm not accusing those who haven't acted yet. Every flood always begins with a trickle, and perhaps those three were that, but now it's time for more to join them. The pioneeres have opened the gates, now more should follow and smash that fortress of ENS denial. That is the only way that more and more doctors will actually start to look for practical solutions to ENS, like Dr Hoser. These 3 alone have managed to cause the progress that we are beginning to feel now. This progress as you mentioned is way too little and too slow. So just imagine what would happen if even as little as 3 more members seriously commit themselves to a serious project which will result in promoting awareness to ENS. I have suggested to David many times in the past to create a forum section for brain storming and task forces for creating awareness to ENS. I think that if he leads discussions in such a sub-section on this board, of how to promote awareness to ENS - that we may come up with many more practical ideas, and then he could appoint task forces to execute these ideas. I hope the day comes and this is done. Until then, the only things that are done are when certain individuals decide they've had enough and they must do something instead of just sitting around and complaining. But they have been few and far between. We need more of those and a much more organized action !

Posting
Very well said TE, but what we really need is money. And most of us don't even have money to visit Dr. Houser which, of course, would be our top priority. Let's face it "Money makes the world go round". Valerie

First of all we need decide on projects, and then see if money is needed. Why do you assume everything should cost a lot? All the examples that I have listed that have been achieved have been achieved through motivated individuals donating their time, nothing else. Besides, if there's one thing I've learnt it is this: When you begin helping yourself others will always fall in and help too. When you don't no body will come and sweep you out of your problems. It's a simple law of evolution. If I'll lay down on the floor sick and depressed, most people will leave me alone, because I become a burden. People only help when they see that there is some hope for me, and it's up to me to show them that hope. Not fair? goes against religion? Ask yourself who would you rather help if you were not suffering from ENS and you were asked to support people with ENS: Would you help those who seem too depressed to help themselevs, or those who struggle to overcome their handicup and put on a brave fight? The universe, or God, or people, or society (pick your choice according to your religion or set of believes) help those who help themselves. Nobody will bet on a dying horse.

View Full Version: Posting