Greetings all!
I have recently seen more myths being spread about vitiligo, all over the internet, and as usual, it is very distressing, and very frustrating to see such 'disinformation' being presented as truth, and seeing people mislead.
I feel it is perfectly fair, and helpful, to share individual experiences, as well as the details of recent medical studies and research which may be of interest. However, we must consider these for what they are; experimental, and often, theoretical.
I feel we must keep in mind that individual experiences, and random medical studies, are not scientific breakthroughs or medical facts, yet.
They are things to consider.
One major myth I see so often is the false and unproven correlation between eating meat and its effects on vitilgo. There is no scientific evidence whatsoever for this claim. The same applies in regard to vitamins and supplements. As a matter of fact, I have seen, on the internet, completely opposite claims about diet which completely contradict each other!
*There is NO SCIENTIFIC evidence whatsoever which shows that eating, or not eating meat, has any effect whatsoever on developing, healing, or stopping the spread of vitiligo.*
"What" is occurring in skin with vitiligo is somewhat known, but the "how and why's" are still not fully known, despite the claims of many people here and on other sites.
And please remember, a 'theory' or one doctor's "study or research," may be very valid or interesting, but doesn't necessarily prove anything.
Is there hope for a cure someday? I would say, of course. But until fully substantiated studies and cures are developed, we as a community are NOT served well by false hopes and mythology.
If people truly care to learn the facts, the facts are out there, you just need to search.
Unfortunately, Vitiligo is one of the biggest mysteries of medical community. I hate this disorder, but the only thing remotely good I can say about it is that is not usually fatal.
I know so many people who have been stricken with serious diseases and other physically debilitating conditions; in some begrudging way, I admit to myself, of all the medical misfortunes which can occur to a person, at least Vitiligo is not a death sentence and is not physically crippling. In that way, I can count my blessings.
Obviously, the emotional and psychological effects are another story, but they are issues we can deal with to a greater degree.
I'm saying/writing all this just to help people keep the facts of vitiligo straight. There is just so much conflicting advice circulating on the internet.
I see so much confusion and unproven biased opinions in the vitiligo community, and I feel it is very important that we understand clearly what we are experiencing in order to move forward towards optimum health, and in some cases, healing.
I truly feel we are a unique community, and as I have said before, I feel a kinship to everyone here.
Love and peace to all!
About Vitiligo and the effects of foods and diet:
http://www.vitiligosupport.org/treatments_and_research/diet.cfm
...and here is some more 'advice' which demonstrates how confusing and conflicting, the issue of herbs and supplements can be. Again, keep in mind this is not gospel truth, but simply one perspective to consider:
http://www.vitiligosupport.org/treatments_and_research/herbs_and_autoimmune_disease.cfm
Replies
For example books with titles such as "cure your vitiligo with 10 simple bla bla" makes me angry.
first because its an obvious scam i mean dude you didn't find cure for anything except your bank loans ...
" Changing life habits and eating healthy " is a very wide and debatable subject and you dont have a degree to even discuss medicine let alone writing a book about a cure for a genetical disease.
second these books , blogs or websites relies on science to claim the anti science crap they fill our minds with. If it wasn't for science such as vaccine you wouldn't be living here talking about how vaccine can cause vitiligo .
Third am not against sharing our own experience and unique individual respond to different proven treatment of vitiligo and even be skeptical about the results, as this can be a good thing , yes we should be very critical of science in terms of neglecting a lot of factors when dealing with us , however, as we do this we should never follow an alternate way that has no proof what so ever and can make us pay even more money and feed the scammers what they only care about.
Unfortunately pseudoscience along with it scammers shouldn't be allowed here, but sometime i find entire forums subjects encouraging it.
Thats how i feel about it joe.
Well, Amr, it is nice to see we have very similar perspectives on this issue. I also see, and am truly aggravated by all the people attempting to make a profit off the suffering of others.
From "vitamin cures" to "magical bathing vacations," to "new breakthroughs" by doctors who recognize a fortune can be made from millions off sufferers grasping for the hope of a cure, all are completely unfounded, exploitative, cruel, and anecdotal.
These people (con men) are consciously fleecing our community by preying on the desperate and uneducated sufferers of vitiligo.
I am glad that there are people like you and I who attempt to raise the awareness of others through honesty and facts.
If there truly was an effective cure or positive therapy, it would spread like wildfire through the millions in the vitiligo community as well as with true healthcare professionals around the world. Alas, at this time there is no such cure or effective treatment, except for a few expensive, limited effective and dangerous light treatments, and certain ointments, (both with inherent side effects), which are only somewhat effective in a relatively very small percentage of people.
Knowledge is power.
Knowledge is power.
Sorry you guys feel that way. I hope you both find something that works for you. The best advice I can give is to simply read others success stories and keep trying something until you have results.
UV light and diet seem to be a recurring theme. It takes months for things to start changing too. So maybe try not to get discouraged.
Changing my diet didn't cost anything. Drinking green tea and running in the sun for 30 minutes at a time are things anybody could try. Just a thought.
Chris, in light of your response which doesn't apply to what I wrote, you didn't understand what I was saying about this issue.
If you read carefully what I wrote, I said it is good to know and consider what works or has worked for others; that is valuable information. But logic and science shows us that what happens to work for one person does not prove anything whatsoever. "Why" some things work for some and not for others is not known.
I wasn't only addressing the con men who sell worthless products; I was also addressing the well meaning people who profess that they have discovered "the ultimate" cure or definitive therapy. That doesn't mean I feel we should all stop trying various approaches which "may" help.
Take for instance, what you wrote about diet, sun, green tea and UV light treatments. They are all elements which some people have used prior to seeing an improvement or repigmentation. But like it or not, there is NO proven correlations between a healing process for vitiligo, and these chosen approaches and therapies.
For all we know, positive "results" could all be coincidental. Yes, an exception could be the UV light treatments which have definitively had "some" positive results with "some" people.
You said green tea and and running, etc, are things anybody could try. I 100% agree with you. But you did not say or imply that "green tea and running" is a cure and has been shown to work for most everyone! That's the difference which I have been trying to express.
I could go online (as I often have) and present to you 100% conflicting advice and documented experiences with diet and other anecdotal remedies, including those you have mentioned, which some people swear have actually worsened their condition.
What I am fully against is how some people on this site and other internet sites, present their individual and highly theoretical information or personal experience, as solid medical advice.
And this includes people who are infatuated with a particular doctor or scientist's "research," and dispense advice as if it was medically proven and sound.
Personally, with what I have learned and read, I choose to try certain vitamins and such, as well as an attempt to maintain a strong constitution which does include exercise and a sound diet.
But I don't tell people what I try is "what works."
Even if what I try works for 'me' (and nothing has as of yet), it would be an undefined and unproven course of action. For all we know, and for all that doctors know, vitiligo can sometimes simply reverse itself or heal for completely unknown reasons; the fact that I took a particular vitamin or ate a certain diet may very well have had nothing to do with my vitiligo's regression.
My point is "not" to stop trying different approaches which we may feel good about, but instead, we should NOT, in desperation, believe everything which over-enthusiastic, well meaning and misguided individuals try to instill in our minds as proven medical facts.
There are many worshipers of one doctor or another, who have been predicting that a "cure" is just around the corner, for many years now. That is pure bull, plain and simple.
We are not children, and we do not need fools giving false hope and disinformation because he or she thinks they are doing a "good thing."
Obviously everyone is free to "believe" whatever they choose to believe in life.
I have shared what I feel is common sense based on facts. If you or anyone feels otherwise, it's your right, but when it comes to a point where a person posts highly theoretical and unproven methods as medical advice, I get pissed off.
Excellent logic. I agree 100%
I hope you find something that works for you. It can get frustrating, I know we've all been there.
Joe, I like your thinking because of being rational, rigorous and not being violate common sense.So could you help to discern mine ? Then I will slowly write to you. Thank you.
You are right Chris.
I would add to it the fact that Friends must start fighting vitiligo properly as quick as possible. The sooner the better.
Sometimes Friends take so long to follow a functional treatment (diet, detox, life style, supplements, UVB-NB, topical cream ; * all at the same time *) that it becomes real difficult to achieve any repigmentation.
Also keep hope in high level because Cure is coming.
PS: I spoke with Dr. Matteo Bordignon last week and he said that he will make a MIA biopsy available in a few weeks in Italy. It means that one will be able to see MIA's presence (his theory) in their white patches. Doctor states that anyone that has NSV will definitely see it's presence.