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Anybody have tips on dealing with Vitiligo?
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For the past couple of years, I've been getting the start of vitiligo on my face. It's an auto-immune attack on the melanin in your skin that eventually leads to the white splotches that are really noticeable on some people. Since it's possibly stress and diet related, I've dialed way back on the intensity stuff and brought my diet to more "middle of the road" to make sure I'm not stressing my body out with weird things and it does seem to help some.

Anyway, I'm looking for tips from people that have it or know people that have it and how they get it to slow down, pause, and in some cases even reverse. My skin doc said it looks like it's actually "filling back in" with pigment. Even though it's surprisingly common, I get conflicting advice and also there isn't much research or medicine for it since it's non life-threatening. For example, I hear both Sun is good for it and Sun is bad for it, so I wanted to drop in here and see if the hive mind knows the actual truth.

Thanks and feel free to PM me too if you want to chat more in person.


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Zen and the Art of Triathlon
Interviews with Jordan Rapp, Helle Frederikson, Angela Naeth, and many more.
http://www.zentriathlon.com
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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I have vitiligo. Started around 10th grade and now I'm probably 80% depigmented. Luckily, I am very fair skinned anyway so its not as noticeable as someone with darker skin. My general attitude is that I have tiger strips and I'm proud of them.

I have no advice on getting it to stop. I've checked out all the resources and honestly, to me, most of it comes off as snake oil.

Best advice is to buy stock in a good sunscreen company. I go through Coppertone Sport 50 like it's water. I carry a bottle in my jersey and reapply when my rides get into the 5 to 6 hour range for IM training.

Then there are things I can't do like lunchtime masters in an outdoor pool or sitting at an open table for lunch outdoors with no shade. I just tell people I'm allergic to direct sunlight and ask if we can site inside or in the shade. I have yet to hear anyone make a big deal out of it.
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Re: Anybody have tips on dealing with Vitiligo? [Jonathan22] [ In reply to ]
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Thanks man! Yeah, I feel like it's probably like I'm slowly becoming a red head. And they deal with it, so don't complain too much. Thanks for the input!


----------------------------------------------------------
Zen and the Art of Triathlon
Interviews with Jordan Rapp, Helle Frederikson, Angela Naeth, and many more.
http://www.zentriathlon.com
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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Don't go up glass elevators or get near the edge of any high places. That should help.

Oh wait.....
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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ZenTriBrett wrote:
For the past couple of years, I've been getting the start of vitiligo on my face. It's an auto-immune attack on the melanin in your skin that eventually leads to the white splotches that are really noticeable on some people. Since it's possibly stress and diet related, I've dialed way back on the intensity stuff and brought my diet to more "middle of the road" to make sure I'm not stressing my body out with weird things and it does seem to help some.

Anyway, I'm looking for tips from people that have it or know people that have it and how they get it to slow down, pause, and in some cases even reverse. My skin doc said it looks like it's actually "filling back in" with pigment. Even though it's surprisingly common, I get conflicting advice and also there isn't much research or medicine for it since it's non life-threatening. For example, I hear both Sun is good for it and Sun is bad for it, so I wanted to drop in here and see if the hive mind knows the actual truth.

Thanks and feel free to PM me too if you want to chat more in person.



Hi Brett,

Love the podcast. I don't have vitiligo, but my doctor has advised me to keep a journal relating to another stress-related health issue I've dealt with. Stress on the body can be so much more than just worrying about stuff. It can be diet, activity, environmental, allergies, etc.--as you allude.

With the physical symptoms, a journal for you could just be a daily or weekly photo of your spots that you can compare to see their regression/progress. You can then track that to life changes.

On the podcast you've talked about ketosis a lot. I do have a relative who was advised against ketosis (he's a crossfitter) because of the stress his doctor felt it was putting on his system--he was having digestive and immune-system problems. It might be worth tracking your spots against the ketosis efforts to see if there is a correlation there.

Best of luck. Keep crushing it out there (just not too, too hard.)
Last edited by: CloversDad: Jul 17, 17 8:33
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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I have it as well. It started about 12 years ago. I have it on my hands, elbows, knees and feet. It gets worse in the summer as I tan. In the winter you can barely tell. I'm a bit conscious of it on my hands, but as I get older I have the mentality of "I really don't care".

I have an acquaintance that has been using this, https://vitiligogreen.com/ and says it's working for him. I haven't talk to him in a while, but may check in to see if this is working for him still. It's a bit pricey and seems to be a bit of snake oil, but if I get a real-world feedback I'll update here.
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Re: Anybody have tips on dealing with Vitiligo? [CloversDad] [ In reply to ]
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CloversDad wrote:
On the podcast you've talked about ketosis a lot. I do have a relative who was advised against ketosis (he's a crossfitter) because of the stress his doctor felt it was putting on his system--he was having digestive and immune-system problems. It might be worth tracking your spots against the ketosis efforts to see if there is a correlation there.

Best of luck. Keep crushing it out there (just not too, too hard.)

After looking at all the factors for quite a while, what you mentioned also seems to me to be the most likely culprit. I'm a big believer in the stress connection, since my wife has Type-1 diabetes (the auto-immune kind) that struck during a very stressful time for her, too. Aside from the low-carbing stuff the past few years, I've always been a super duper happy healthy guy with low stress. This vitiligo stuff happening around the same time as playing around with keto is certainly odd.


----------------------------------------------------------
Zen and the Art of Triathlon
Interviews with Jordan Rapp, Helle Frederikson, Angela Naeth, and many more.
http://www.zentriathlon.com
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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I developed vitiligo last year and have seen significant recession in the last year. I'm 29, have always spent summers outside, do not often wear sunscreen (bad, I know), live in the north so I don't get sun for half the year, train 10-16hrs/wk during the summer/8-10hrs/wk during the winter. From what I have read, my feeling is vitiligo is a genetic disposition. However I made the following changes in the last year which may or may not contributed to the recession:

-Used a topical medicine. Last year (April-August) I used a Rx cream 2x/day on the affected area. Triamcinolone Acetonide. I took pictures of the area once a week and did not notice any changes from April vs. Aug. I stopped using it in Aug. Then winter began and my skin didn't see the sun again until May.
-Stopped drinking diet coke. Drank ~2/day. Probably no effect but good in general. Pretty much only drink water now + 1 coffee a day.
-Reduced stress. I'm an engineer. Went from working in a large corp HQ to working 100% remote. Began this in Oct and probably the biggest health improvement in the last year. Huge reduction in stress. Yuge
-Working remote also improved my diet as I no longer eat food that's out in the break room or anything from vending machines. Essentially I no longer eat any sweets. Last year I would probably consume at least 1 'sweet' a day.
-Eat more meat. I wasn't vegetarian but just didn't eat much meat. Now maybe eat .25lb/day, nothing processed, grass fed/cage free type stuff
-Still don't wear sunscreen. So maybe exposing the affected area has worked for me? It hasn't made it worse. I do wear hats now for casual activities but not for training. (I train 100% outdoors including my swimming)

Last year I would say vitiligo covered ~25% of my face. This year I would say it is under 5% and not noticeable unless you were looking for it. The above is what I have done. I can't say whether or not it has contributed to the improvement or if there is one thing in particular that was more effective than the rest. Like you said, there isn't much research/data on it and as far as I know it could get worse next year. Hope that helps.
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Re: Anybody have tips on dealing with Vitiligo? [SteeleMan] [ In reply to ]
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Steeleman, are you saying you are seeing re-pigmentation?

Brian

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Re: Anybody have tips on dealing with Vitiligo? [cbritri] [ In reply to ]
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Yes, I have seen re-pigmentation in most of the area that was affected.
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Re: Anybody have tips on dealing with Vitiligo? [ZenTriBrett] [ In reply to ]
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Phototherapy is a standard treatment for vitiligo, which is why sun exposure can help. Patients with vitiligo actually have lower rates of skin cancer. This makes sense since the cells that could potentially give rise to melanoma are attacked by the immune system in vitiligo (depigmented skin lacks melanocytes). Still important to wear sunscreen to avoid burns and minimize the color contrast with normal skin, although some sun exposure may actually suppress the immune response and cause repigmentation.

That said, there are no great treatments. Topical steroids can work sometimes. Phototherapy as I mentioned. When the pigment comes back, it starts near the hair follicles (looks speckled).

Hopefully there will be better treatments available in the near future.
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Re: Anybody have tips on dealing with Vitiligo? [kells] [ In reply to ]
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That's what my face looks like - speckled very dark like crazy around my beard hair follicles, like it's fighting back. It looks like 5 o'clock shadow scruff from a distance and gets really dark with sun exposure. But that's against a background of very pale skin that has no pigment and turns pink from sun exposure. It's very odd indeed. It seems to get worse, then better, then who knows what. Maybe those fluctuations are sun, diet, and stress related. Thanks for the tips!


----------------------------------------------------------
Zen and the Art of Triathlon
Interviews with Jordan Rapp, Helle Frederikson, Angela Naeth, and many more.
http://www.zentriathlon.com
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