Alopecia World
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Extreme Negativity
Maybe it's just me, but as of late, there is a lot of negativity amongst board members. A lot of it seems geared towards treatments/ and or lack there of. The longer I am on the board, I can pretty much tell who is going to respond to what, and in what type of manner. For example there's a few members, who whenever a new treatment someone has tried comes out, are quick to ask a million questions about the treatment, and then chop them down and refute their reasoning for starting the treatment. Also, there's a few members who whenever a new person comes on board and expresses concern about their condition, they will quickly tell them, "hey, there's no cure it's just something you have to deal with".
Now, I'm all for being realistic. But I am not for destroying hope for anyone. If someone wants to try a new treatment, hey, I'm for it. If someone wants reassurance that a cure for Alopecia will soon be found, then I'm all for reassuring. There's enough negativity in this world, and coping with Alopecia is enough stress for everyone.
Now, I'm all for being realistic. But I am not for destroying hope for anyone. If someone wants to try a new treatment, hey, I'm for it. If someone wants reassurance that a cure for Alopecia will soon be found, then I'm all for reassuring. There's enough negativity in this world, and coping with Alopecia is enough stress for everyone.
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Comment by Kayreyn on May 20, 2009 at 9:41pm
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Thanks Lois, I'm glad I'm not the only one who's noticed the negativity. LOL - you're right, I guess there are some molecular biologist here :) All the nay-sayers and "there will never be a cure" folks can keep their negativity, I still have hope, there will be a cure soon!
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Comment by Melissa Harris on May 20, 2009 at 11:20pm
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Kayreyn,
Thanks for the comment. I felt like that sometimes. If you look at my blogs, I'm always looking for hope!! I kinda just assumed that everyone with AA goes AT or AU now and it's only a matter of time. It got me very depressed. Now I just try to follow what my doctors tell me and pray a lot and stress a lot and try to just live my life as much as I can without thinking about my hair all the time. It's an awful way to spend your life, thinking about it all the time. I am so worn out now. I keep pushing for my husband and my kids but I'm not gonna lie, it's been HARD!! Thanks for the positive vibe, it is appreciated!!!
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Comment by JeffreySF on May 21, 2009 at 2:20am
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Unfortunatly, there a few bad seeds here at AW that are (in my opinion) only here to create negativity and try to bring us down.
I also have a suspicion that these people who I refer to as "The Others" is actually one individual perhaps more who have multiple profiles on AW.
I dont necessarilly police AW but lets just say I have my "Watch List"
Good prevails over evil.
A little piece of advice from me to you...Stay Positive and ignore distastful posts.
Silence is Golden
Have a great day!!!
Jeffrey
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Comment by Tallgirl on May 21, 2009 at 2:47am
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I also think age matters. The young, who are looking for relationships and marriage, of course HAVE to have hope for a cure in their lifetime. Old and done...old and divorced over alopecia? Not so much. But the beauty of age is the ACCEPTANCE of self, life, fate, possibility of having to go it without...and then channeling the thoughts and energy elsewhere. You must admit, concern over alopecia can consume one's time, thoughts, energy, emotions, etc. I heard a NAAF spokesperson say at the 2000 conference in Oakland that a treatment was 5 years off, and a cure 10 years away. 2010 is almost here. I think 9-11 and the economy have slowed the research moneys that may have made her schedule come true, but even so, I am willing to look at any research positives...no matter when/if they come.
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Unfortunatly we are pretty much at a standstill for a cure. But with that said, the most recent research has found a gene on the white blood cell which pre-dissposses certain people to trigger/develop alopecia.With further research anything is possible.
Stay positive. This disease can always turn itself off without any treatment at all.
Jeffrey
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Thanks Melissa, Jeffrey and Tallgirl. Jeffrey, I will definitely take your advice, and stay positive. You're right, silence is golden, but it's hard sometimes when I see people being negative or just plain mean, simply because they disagree. I'll try my best to let "the others" -lol- dwell in their own negativity and continue to try to lift the hopes of those who believe a cure is coming soon!
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That's the spirit Susan! You remain positive. Your hair will continue to grow for you! I think we may be on to something with the sulfasalazine!
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