Ok I will be the first to admit that as soon as one of these bonkers 'remedies' appears to actually work I will be like a dog on heat gettting that bitch cure, but there appears to be no serious research in the area the most sensible thing I have seen is the suggestion for a pooled DNA bank mentioned here but unfortunately the reality is that getting 'scientists' to work together is like trying to herd cats. There may be some scientists that work in the interest of the common good or at least would like to but the system is stacked against them. We just have a non life threatening skin disorder it means nothing in medical terms. What was really needed was MJ to leave massive amounts of money to vitiligo research - maybe now that apparently his child has vit someone with balls can lobby the family for cash ....anyone up for it? I dont care if this seems crass all I know is that if I accumulated a huge amount of wealth I would want some of it to go to Vit research.
You need to be a member of Vitiligo Friends to add comments!
Hi Reza, yes I was probably not thinking when I had my rant!! I use the term 'get a grip' all the time in my day to day life as I just love the term, but now you have pointed that out I see that in writing without the benefit of hearing the way it is said, it could seem a little harsh, pompous and arrogant and I apologise. I did say I would be the first in th queue if anything did work and by this I was hoping to show that in reality I am glad that people are willing to put themselves out there and try everything. But my main point is the money situation. Now if 1% allegedly have Vit if you take just take America alone that would mean there are about 3 million people with Vit in the US - if every one of us gave $10 that would make $30 million dollars. Extend that around the world (obviously some people have nothing to give) but some could give a little more on behalf of those unable to give and 1% of 6 Billion people giving $10 is ....er....well... (is it 600 million????) in any case, an awful lot of money. With that in a Vit Bank we could weld some power and influence. So whoever it is on here that wants to start the DNA Bank perhaps at the same time they could open a Vit Bank account where money for the time being just flows into and once the amount reaches a critical mass then we strike!!! Actually, I dont know if I believe that 1% of population have Vit - In all my life I have never met another person with visible Vitiligo (I have seen people passing by with it) I have probably met thousands and thousands of people so you would expect that 10 in every thousand had Vit - I dont think anyone has a clue how many people have it where that 1% figure came from I do not know.......
At least someone knows it all. :) I was worried for a second. (ok that's my sarcasm)
However, I agree that money talks and bullshit walks. Yes, the big corporations have all the scientists busy and yes we'd have to cough up the dough to make a dent and yes companies would rather us buy products than be cured. I think we've all noticed and agree that not enough is being done to "solve" our problem.
Now on the other hand this site isn't necessarily for scientists, businesses or to collaborate and find the magical cure. It's for people. I didn't get that at first cause I was (and still am) desperate to make vitiligo disappear (probably like you). But now I'm so f#$%ing happy to start talking to the people who's opinions I've always wanted to hear and ask questions I've only asked myself (like does anyone else's' vitiligo spread when they are more stressed?). I'm not alone, thank goodness.
It's a great thing that people are able to communicate and share anything and everything, including vitamins, green teas, smoking, and yup even black pepper. You can't (but might) deny that. So I have to thank you, now I know my grip is a little stronger than I had thought. :)
Again I'm not perfect, I've said the same thing you said (pretty much), to myself, that you just told to everyone. And it does feel good to vent. But at the same time that "get a grip" was a little harsh in my opinion.
Based on your other forum posts, you seem like you'd be a great vitiligo advocate, OR a perfect lifetime negative-nancy. In all seriousness, you might want to collect all that energy you have join the NVF and try to spread awareness and get more people to donate to specific kinds of research and generally make-it-happen. If they had someone as determined as you (seem) to wake people up about what it takes to make some progress (more money)... I'd probably send them some more.
We have a non-profit, it's called the National Vitiligo Foundation... and if there is one place to start with DNA research or a direction to throw money in... it's our obligation to start funneling that energy in their direction, not at a community of survivors.
So my reply isn't taken out of context, the original title was "Are you all Fu*cking Nuts (brazil), Vit B+, Vit B-, Green Tea, Radioactive rays, smoking, Black pepper, GET A GRIP"
Replies
However, I agree that money talks and bullshit walks. Yes, the big corporations have all the scientists busy and yes we'd have to cough up the dough to make a dent and yes companies would rather us buy products than be cured. I think we've all noticed and agree that not enough is being done to "solve" our problem.
Now on the other hand this site isn't necessarily for scientists, businesses or to collaborate and find the magical cure. It's for people. I didn't get that at first cause I was (and still am) desperate to make vitiligo disappear (probably like you). But now I'm so f#$%ing happy to start talking to the people who's opinions I've always wanted to hear and ask questions I've only asked myself (like does anyone else's' vitiligo spread when they are more stressed?). I'm not alone, thank goodness.
It's a great thing that people are able to communicate and share anything and everything, including vitamins, green teas, smoking, and yup even black pepper. You can't (but might) deny that. So I have to thank you, now I know my grip is a little stronger than I had thought. :)
Again I'm not perfect, I've said the same thing you said (pretty much), to myself, that you just told to everyone. And it does feel good to vent. But at the same time that "get a grip" was a little harsh in my opinion.
Based on your other forum posts, you seem like you'd be a great vitiligo advocate, OR a perfect lifetime negative-nancy. In all seriousness, you might want to collect all that energy you have join the NVF and try to spread awareness and get more people to donate to specific kinds of research and generally make-it-happen. If they had someone as determined as you (seem) to wake people up about what it takes to make some progress (more money)... I'd probably send them some more.
We have a non-profit, it's called the National Vitiligo Foundation... and if there is one place to start with DNA research or a direction to throw money in... it's our obligation to start funneling that energy in their direction, not at a community of survivors.