I've wanted to share this with you forever and I really need your thoughts and ideas and most importantly respect because it's very personal. I, like the rest of you, know that you cannot catch Vitiligo. However, I think that I may have contracted something that caused me to have Vitiligo. I started dating my fiance about 9 years ago. I was in high school and he was just out. I started to notice weird patches on my upper thighs right around the time I became sexually active with him. We have only ever been with each other. I noticed that he had some discoloration on his testicles also.

When I was 21 I was officially diagnosed with Vitiligo. My fiance has never been officially diagnosed, but his Vitiligo has manifested on his testicles, knees and in a few gray hairs. He once got a spot by his eye that he sun burned so badly it became bright red and repigmented itself. I believe in my heart that we contracted something. Either he gave it to me, or the other way around. Obviously it doesn't change my relationship with him, we've been together 9 years and we are more in love than ever before. However, our families can't help but think this is too strange for coincidence, and I agree.

My biggest issue with this theory is that I have nothing to go on. My Vit is straight from the text books. Pure white, in all the typical spots, does not itch, no scaliness, not darker around the edges. Even Protopic repigmented my area around my eyes. Of course nobody else has done further tests because I could be the poster child for Vitiligo 

This week I am going to a dermatologist to request a skin scrape to see if there is something else going on. I don't care if doctors say this is impossible. There is a first for EVERYTHING. Let me know your thoughts and once again thank you so much for being there for me when I feel so alone in the world.

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Replies

  • It's called tinea versi color. Selsun blue or any anti dandruff has zinc in it. Honestly how can you tell the difference between vitilgo and tinea versi color? Both can itch .
  • Some people develop similar to vitiligo a white patch or more over their body that is caused by the sun. Its treated by using selson blue blue shampoo for 2 weeks. I met several.people after moving from Seattle to AZ who I thought had vitiligo but have a sun allergy? Any how guy at my local store was white over hands and face... I talked to him and he rides a motorcycle and forgets to use sunscreen. He told me the treatment is dandruff shampoo specifically Selsom Blue. I daw him again later and his arms and face were normal again. I tried it ..it didn't work for me. I can't remember what its called but if you Google it you'll find selson blue treats this. It might be a fungus?
  • hi amanda, how did you go with your investigation?

    I did notice husband got a couple of small patches not long after he moved into his house and not long after I moved in too.

    I think this is very interesting to explore and wonder if any other vit
    patients have noticed similar. my inclination is to wonder if there is an exposure to chemical taking place or perhaps a viral component as suggested by other replier.

    no-one has 'cracked' the code as yet for vitiligo as yet so there could be some real progress to be made investigating these such "coincidences".
    • some people suspect that there is a fungal infection involved with vitiligo.  that may be way neem oil and coconut oil work for some people.  They are anti fungal, antiviral, etc.  There is no harm in trying them on your patches.  I have even heard of people using raw organic honey...this is anti fungal.  Honestly I definitely think the TRIGGER IS an allergy....then some time of fungal infection takes place.  on the face if you can tolerate why not try coconut oil and honey.  both are anti fungal and have no side effects.  of course just have to make sure that you are not allergic to coconut or honey.  try to use raw and organic so there are no additives.

  • Hi Amanda,

     

    I am not a medical expert but I think if it is fungal your skin will have a scaly surface to the skin. Vitiligo can be triggered by chemicals, colourants, rubber, stress, etc. Is there a history of anything like this or any autoimmune disease in the family?

    Remember it is not the end of the world. We are all facing this and we are more than skin. We are strength and love.

  • Hi Amanda,

    Well, this is quite of a story! I don't know, maybe it is not vitiligo  but a fungus? Well, last time I checked at my dermatologist he told me that along with my vitligo, a fungus could've got 'involved' enlarging even my whithe patches, 'cause my vitiligo itches a lot , I got that idea (that it could be a versicolor) from my friend who all of a sudden started having white patches, similar to vitiligo (no itching though) and her doc told her it is a versicolor. Maybe you need a second opinion (maybe you already had that). I saw more than 20 dermatologists, professors included and 30% of them told  me it is not viligo (even though it looks and behaves the same), but they could not tell me what else it could be. Honestly, I think there are different 'grades' in and of vitiligo. It seems to me that even if the decolourization is similar to all vitligo patients, I think the skindiscorder behaves in a quite personal way. It is amazing though how you guys got it at the same time together, maybe it is reaction to something, maybe even a fungus from sheets you guys slept in (no offence, I had a friend at university who caught fungus from sheets because of staying over at friends, you know how it goes with students and partying etc, they don't really take care of laundry how it should :) ). I don't know, maybe it doesn't even have to do with sexual activity, maybe you guys went to some lake and caught a fungus there or something. I am sorry, I just keep on mentioning the fungus, 'cause indeed it seems so weird that you guys caught it both. I am sorry, I don't mean to give you any false hope, I'm just trying to make you feel better. I mean, don't feel 'alone' , there's no need, I know that vitiligo can put one down like terrible, if it can console you, at least your boyfriend understands you - the vitiligo. 

    • Sue, thank you so much for your response. I couldn't agree more about the different "grades" of Vitiligo. I personally feel that we all get Vitiligo for different reasons. Either it is an allergic reaction, exposure to something, lack of something in a diet, intolerance to a certain food. For whatever reason our bodies react by losing pigment. However this is my personal opinion. Lately I've been trying to let the idea of fungus go simply because I no longer have insurance that will adequately cover doctors visits and I simply got tired of not being able to find a doctor who wanted to listen to me. It sounds depressing but it actually is kind of relieving. I've been applying gradual self tanner to my spots. I "paint" them with a brush and it starting to help cover it up, even if it's not healing it. Thanks again for your response. Best of luck to you!

  • Hi! Very interesting how you both may have vitiligo. When I first read this I was thinking is it possible it is tinea versicolor- a fungal infection which closely resembles vitiligo? But since protopic did help that is more of a sign of vitiligo because I don't believe that would help tinea since it is primarily an immune suppressant. If the doctor didn't let you get the skin scrape and you want it done Definitely check out several derms! I had to go to so many before finding a descent one! One of the first ones I went to said they would do that for me but I chose not to because I already knew that it was vitiligo.

  • Protopic is making my face red and breaking it out.....and the vit on my face is spreading so bad! It sucks!

    • Protopic made my face break out so badly too..took a month to get back to normal after I stopped it. I was so disappointed!  I would suggest not using it on your face unless the breaking out is minimal and worth it. I use coconut oil on my face for now and combined with sun I did get a few repigmented spots over the summer on my face which is very surprising because I have never had any results on my face before it. Also, have you tried any diet/vitamin changes?

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