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Does anyone here also have vitiligo?

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  • irfran
    replied
    Yes, I am aware that blueberries and pears may be a problem for vitiligo.

    I do not like blueberries and rarely eat a pear. Strange that these fruits are okay for one disease I have and bad for the other.

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  • mspinosi
    replied
    Glad to hear that you repigmented quickly. I also wanted to mention that I had started eating more blueberries and pears since they are the safe fruits to eat with IC. I then found out these two fruits should be avoided if you have vitiligo. What are the chances??!! We should play the lottery!

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  • irfran
    replied
    My derm allowed me to not put goggles on my eyes. Of course, I keep my eyes shut. They repigmented rather quickly. Still have some on my eyelids but it is not very noticeable. Don't you just love raccoon eyes!!!!!

    The face is very easy to repigment. Hands and feet are very hard to repigment.

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  • mspinosi
    replied
    Thank you for the reply. I am actually thinking of trying light therapy. I have vitiligo around my eyes and I was advised by my derm that it's not safe for eyes. I am trying to locate a doctor that provides light therapy for more information. Thanks again.

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  • sailawaygrl
    replied
    Thanks for the info, I will pass it along.

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  • irfran
    replied
    First of all your cousin will need a prescription for a NBUVB machine. I got mine from my PCP and not my dermatologist.

    Back in 2002, mine cost close to $2000. I purchased a wrap around unit from Daavlin (means I do my front and then turn around and do my back.) There are other companies that also sell the units.

    Some insurance companies will help pay for the unit. I never tried to get them to pay for mine. The company she purchases it from will deal with the insurance company for her.

    There is a wealth of information on vitiligosupport.org. There posts can be read and researched but you cannot post unless you are a member. I believe it costs around $25.00 per year.

    Leave a comment:


  • sailawaygrl
    replied
    Irfran,

    What type of cost is involved in having your own UVB machine? I have a relative that has vitiligo and decided to quit doing that in the office because of the amount of time it took from her schedule. She is a mother and teacher so she is very busy. I thought I would let her know about this in home option.
    Thank you,
    Sandra

    Leave a comment:


  • irfran
    replied
    Yes, I also have Vitiligo. I have had it around 40 years. I have my own narrow band UVB machine (similar to what they have at a dermatology office) and have been have able to repigment significantly. The only depigmenting I have had since the onset of IC three years ago was in the beginning of my IC. I feel the three bouts of antibiotics before the IC diagnosis set off my vit. I have no medical proof that the antibiotics caused the spread, it is just my personal opinion.

    I do not feel Prelief has caused any spread of the vit.

    Leave a comment:


  • mspinosi
    started a topic Does anyone here also have vitiligo?

    Does anyone here also have vitiligo?

    Hi,
    I have vitiligo and was wondering if anyone here has both vitiligo and IC. I was diagnosed with IC over a year ago (I've had vitiligo for over 20 years) and I noticed my vitiligo has gotten worse. Not sure if stress/diet changes for IC caused my vitiligo to worsen. I also take Prelief with certain foods and am wondering if the Prelief is causing my vitiligo to worsen.

    Thank you,
    Maria
    Last edited by mspinosi; 04-17-2011, 03:40 PM.
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