Useless Forum...

#1
I posted a thread on here a few days ago and got no response. At first it was insulting(because several dozen people have viewed it), but then I started to look a bit deeper into the threads on here. The majority of them go unanswered or only have responses by the original poster. Also, and not to sound like a hypocrite, most of the people on here are trying to one up each others stories. I'd rather hear the actual details of the personal experience of the patients who have gone through the operations/treatments necessary for this problem, not the massive amount of pain and "longer than yours recovery attitude". The forums on this site are useless for any kind of valuable info for someone with this condition.

On the other hand, the info within this site seems to be very valuable to someone with this condition.
 

LILLY

Very Helpful
#2
Ryan 99% of the people here are looking for answers just like you. It's a give and take. Instead of waiting around seeing what you can take, why not jump in and see what you can give?
 
#3
Lilly, you still didn't even attempt to look at the new member's issue. What can a new member give when they are here for the first time with no information. Real welcoming of you right?

I agree, the website is 95% useless. You can read horror stories and see gross photos, but there's no real help. Book a specialist appointment and hope for the best RyanN.
 

LILLY

Very Helpful
#4
I actually did look at this new member's history before I replied. Ryan has been dealing with this disease for 10 years. Anyone dealing with this for 10 years surely can give a bit of encouragement to a newly diagnosed person. If someone is reading and not responding how can they criticize others for the same thing?
 
#5
I guess I feel that if there is a forum, then someone should moderate the threads. This site has some potential and the more I learn about my own experience I will try to share with others. I can see that most people are looking for help rather than trying to give it and that probably makes it difficult to get any fresh responses.
 

LILLY

Very Helpful
#6
I understand your frustration. It's a very frustrating disease and everyone is looking for answers. It's just hard for me to see the forum judged so harshly when it has literally helped thousands of people. Without this forum I would never have learned about cleft lift surgery. My son would have had a very extensive open wound surgery. I honestly feel this forum saved my son from months or years of difficult recovery. I am still very thankful for it 5 years later.
 
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