New discovery, vitiligo gene same as one for lupus, you may want to avoid hair dyes

Hi--

Here's the medical news press release on the discovery and the various autoimmune diseases linked with it and some new info on why and when we develop them when we do (triggers).

www.bloodindex.org/view_news_zone.php?id=331

<Edited to make link live.>

Post Edited By Moderator (Lynnwood) : 4/29/2009 3:56:10 PM (GMT-6)

Hi--
looked for a phenol free hair dye list and couldn't find one. I called clairol and they said that natural instincts loving care-- you know, the old loving care temporary color is PPB (phenol) free. I urged them to make safer hair colors and the lady was really nice and agreed to forward my suggestion to the company. It's funny, the people who usually want to use hair dye the most--people prematurely gray or people with vitiligo are the ones that have the most trouble with it. I've got a few spots from when I last colored that haven't repigented, even with the new vitiligo creams I'm using. I hope that you all read this stuff about the genetic findings. I think it is very important and that soon, are various and sundry aliments will finally be recognized as a syndrome or a few syndromes and will be able to be treated more effectively with less medication by attacking the root cause of it all. Take care.

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Love, Marji

okay, Marji. My brain won't let me read, comprehend and retain all of this. You are too smart for me!!!
Is it possible to do a summary or should I just let it go and ask the girl who colors my hair if the stuff she uses is whatever free. Or is it too late and I can just say what the H?

xoxo emmie

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_{^{SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy}}

I don't know, emmi. Most dyes have it in and the girl that does your hair probably wouldn't know, the stuff is called PPB. I called clairol and they said plain old Loving Care temporary color is the only one they make without PPBs but they would forward the request on making more products PPB free. Basically, the article is saying that we have genetic tendency to have autoimmune diseases, and they found the gene and all and this one gene is responsible for 80 autoimmune conditions. Anyway, things we do in our lives or chemicals we get exposed to or maybe other illnesses we get trigger the autoimmune disease to develop. That's why so many people have lots of different AI conditions and some of their relatives may never get any, but they could still have the gene mutation. By finding out what the triggers are, they can prevent autoimmune disease in our children, prevent us from developing more problems, and they hope they might be able to regress existing autoimmune diseases in people with lupus etc. Meaning they would undo the disease and hopefully undo the damage it has caused, basically kind of curing a person, they would still have the gene mutation, but it wouldn't effect them. It's very exciting news.

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Love, Marji

That stinks!! I am due to get my highlights done and now I need to think twice about it. I wonder if they can do it if I bring the Loving Care in and ask them to use that (I'd still have to have them do it because there is no way that I would attempt to highlight myself). I have to say, I would really miss the highlights but if its cause for worse, than I will get by without them. Thanks for the info.

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I could be totally wrong, but I believe it is the dark permanent dye which causes problems. There was a study done years ago about hair dye and lupus. It said that the dye could cause a flare in people with lupus. This is why I decided to go gray (now white !) a long time ago.
Nan

Thanks for the summary, Marj. That is exciting news about the gene. You figure in probably 2-3 generations diseases that are rampant now will most likely be nearly wiped out due to all this gene stuff. Kind of like what has happened to polio in our, well, in my lifetime. Or even measles. I had measles, German measles (rubella), chicken pox, mumps. And I remember it being a big deal getting a polio vaccine as a little girl. (my brain was good then!) Kids are immunized for all of the childhood diseases I had.

I really wonder what it will be like a couple of generations from now.....

xoxo emmie

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_{^{SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy}}

Hi--
Yeah, I was really excited by the news. Can you imagine regressing the disease? Wouldn't that be great. I think in the next ten years we'll see some really promising new treatments coming out as well as preventative measures. On the hair dye issue, there may be a problem with dark pigment as well, but the real problem with vitiligo is the PPB, or phenols in it. I used to double process my hair, bleach it out totally white, then tone it. My vitiligo started with a drop of creme bleach (developer and bleach mixture--the white liquid and the oily stuff or in my case powder) mixture, the same stuff in all permanent hair dyes, which is why there is now warnings on the packages that they may cause pigment loss. This is what they are talking about. Of course, that wasn't on there until just recently in the last year or two I think. Babs, your hair dresser may or may not be aware of this issue, you should definitely bring it up before, call or whatever. If they are careful, they may not get any on your skin. My vitiligo started from a single drop of hair color on my thigh that I wiped off immediately, but it had already taken the pigment, then it spread from there all over my body. Loving care will not lighten your hair, its just a washout color that lasts 6 - 12 shampoos. Possibly your stylist has something better. I can't afford to go to those places so I'm really out of touch. I would call and talk to someone about it. I've been using Balsam color for a while and it hasn't affected me, though it should and Clairol doesn't know why it didn't. Maybe some are worse than others and maybe because I usually just do root touchup and I'm gray there anyway so I wouldn't notice. Definitely, having someone else do it and only getting highlights would be the safest way to go as far as applying it. I just wanted to warn people so they didn't have another problem to add to the list. Not having pigment is a real drag, it burns bad and people stare. I'm glad this helped some people. I think it's important to know, especially if you have teenagers who may want to dye their hair and all.

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Love, Marji

Wow I have two brothers with vitiligo, but no symptoms of Lupus. I have a sister with significant rhuematoid arthritis. What a gene pool! LOL Tammy

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I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.

I had been getting highlights for about a year, then went for the whole dye job for my daughters wedding in 2007. I had been feeling pretty good prior to that, but I fell apart physically after the wedding - actually started sliding down that slope just beforehand - right after getting my hair dyed. Finally did some research and also found a study that implicated hair dye as a possible flare trigger, so I stopped, just in case. Was just about to go for highlights again now (after 1 1/2 yrs) - because my hair is just so much thinner, finer, whiter.....let's just say I throw my hands up! I had decided not doing it hadn't made a bit of difference (still feel like I'm in perpetual flare) so what the heck. But I'll have to think twice as well, now.
Thanks for the info, Marji. Hope you're feeling better.
Lucy

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_{diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007}

Here is a website that talks about what phenol is:

en.wikipedia.org/wiki/Phenol

Phenol is also known as: Carbolic Acid, Benzenol, Phenylic Acid, Hydroxybenzene, and Phenic acid -- so ask your hairdressers if what they want to use on you contains any of these substances!

The "PPB" mentioned about is not a substance, it is an abbreviation for "parts per billion".

Cheers,

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Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

dang, I started going grey at 16 and with an infant there is no way I am willing to just let it go I have a streak of white like Rouge from Xmen. It looks horrid on me. I just can't pull off having half my bangs white. I have never had problems from dying my hair though I am careful not to use dark dyes. I tend to lighten my hair for the most part or add red. I wonder how henna would look on my hair.

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Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

FYI . . . The over the counter hair dyes are less restricted (and potentially more dangerous) than the ones used by hair dressers. The FDA regulates the hair salons but NOT our home hair colors. Go figure. If I see reference to that again, I'll post the link.

*sighhhh*

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In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Believe it or not . . . this is our good old FDA:

http://www.cfsan.fda.gov/~dms/cos-818.html

I've waffled a few times on the hair color issue cause of lupus. Working in hospital labs I was exposed to all sorts of chemicals, including phenols. Until recently I colored my hair regularly using the Clairol professional stuff at home, but a few months after being on Cellcept my hair looked like straw. I got it cut very short with highlights and loved it, but highlights are so expensive I haven't done anything with it for a while. I'm sure my body is enjoying the break from all those chemicals. Love, Butterflake  

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Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

No one could understand my grandmother's lupus and she always dyed her hair brown until age 95.  Now I have some minor vitiligo and have been coloring my hair most of my adult life; then I read the warning on the box about (rare) skin depigmentation.  I'm now growing out my salt & pepper hair and actually liking it.  My husband primarily wants me healthy and now understands my great concern!