While reading The Autoimmune Epidemic, I came across a sentence that said: “Several studies have shown that women who use hair dye have three times the risk of developing lupus — that is, if they also carry specific genes that make them susceptible to autoimmune disease in the first place.”Hmmm, the key here is “if they also carry specific genes that make them susceptible to autoimmune disease.” The question is “how would they know?”

While trying to view some of the videos for the Autoimmune Summit’s webcast — Windows Media Player sucks so it has not been easy — Virginia T. Ladd, President and Executive Director of AARDA made a very interesting observation. She said there are several types of cancers and we have Oncologists for cancer patients. We have several types of autoimmune diseases but we don’t have Autoimmunologists.

If there were autoimmunologists and let’s say you found you have some pretty strange allergies, you might go see an autoimmunologist who could test you for any of the autoimmune diseases out there and you would know and perhaps come up with some alternatives to hair dyes, perhaps, before you end up one of the unfortunate ones with acute renal failure following PPD poisoning from hair dye, or allergic contact dermatitis, or anaphylaxis. I’m not losing it here, just look at this, this and this.

Okay, so much for the shock and awe. I did go over to Lupus Foundation of America to see if they had anything to say about hair dyes and lupus and I found the following on their site:

31. I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair?

One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association and no recent evidence has been reported. The initial study findings are of uncertain significance and most physicians do not feel that hair dye is risky for people with lupus.

Then I cruised over to WebMD and found the following from an article entitled Lipstick, Hair Dyes Raise Lupus Risk?:

Nov. 17, 2005 — Regularly sporting lipstick and dying your hair may increase a woman’s risk of developing lupus, according to preliminary new research, but only if the woman already has a higher risk.

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Exactly how cosmetics may raise risk of lupus is unknown, but lipstick can contain phthalates, chemical compounds used to make plastics, which also make lipstick creamier. These compounds have been linked to lupus in animal models.

When a woman wears lipstick, she may swallow a little of it, but it can also be absorbed through the lining of the mouth.

Permanent hair dyes contain potentially lupus-triggering chemicals called aromatic amines and hydrazines, according to the study.

Now, I’ll tell you my story. I began dying my hair when I was about 28- or 29-years old. If I had problems I never noticed and certainly never attributed it to lupus because I didn’t know I had lupus at the time. It was not until I was in my late thirties that I noticed something odd about hair dyes and my head. A day or two after dying my hair I noticed flat patches on my scalp. I noticed them only because I was running my hands through my hair at the time — something I seldom do. I immediately thought it had to have been the dye because I used something other than my usual product.

Months later, using the product I typically used, same thing. Because I thought my scalp might have been experiencing over processing — perms, dyes, name it, I did it — I started braiding my hair
but you know, I noticed the same thing whenever I went into the sun, under florescent lights, those darn little things kept showing up in my scalp. Okay, so it’s not the dye right?

I continued dying my hair thinking I’m getting old and crap happens when you get old. However, the more I dyed my hair the more these flat things showed up and at times they itched. Sometimes a cluster rash showed up on my head and finally — post diagnosis with lupus now — I ended up with so many of those flat patches on my head I could not take it.

I have not used a dye in my hair for about two years. I also have not experienced those flat patches on my scalp either, not even after taking my bald head out in the sun. It had to be the dye.

Now, the next question, did I have any health affects with dye? I don’t know. If I did, again, I never attributed it to the hair dye. I have always called myself a lemon with good and bad days, before and after my lupus diagnosis. If anything flared as a result of dying my hair it just fell in with my usual “I’m having a bad day.” I couldn’t tell you.

I do have an aunt who stopped dying her hair (in her 70s) because she developed an allergic reaction to the dyes and rashes. A rash would do it for me too.

I will admit I have had problems with some lipsticks and makeup. There are some products out there — I will not name them — that will send me into a tizzy in a hot flash. I cannot tell you how much makeup I have thrown out over the years after being recommended as “dah bomb” and literally experiencing “dah bomb.” Yes, I lay it upon my skin, within minutes — sometimes hours — I’m swelling, everything in my body reacts to it, and before I know it I’m sick as “dah bomb.” I don’t care how hypoallergenic the manufacturer claims it is. Oh my God!

Since we don’t have Autoimmunologists to cover all of the autoimmune diseases out here, we suffer through with Dermatologists for skin ailments, Rheumatologists for joint aches and pains, Nephrologists for our kidneys, Neurologists for our brains, etc. At some point, after visiting many or all of these doctors we may end up with a diagnosis.

Problem is, you may see any of these doctors for strangeness you are experiencing but never receive the diagnosis of lupus. Many don’t know they are susceptible until they hit something in their environment or lives that cause the ugly wolf to rage. Yes indeed, that one day when, unbeknownst to you, your Anti-dsDNA Antibodies are off the charts and you dye your hair, or put on some makeup, or apply a sliver of lipstick and voila, a reaction/flare from hell. You end up being hospitalized, diagnosed with lupus and you didn’t know you had lupus.

If you’re like me, a person who has used hair dye all of her life, you may find you have no problems with the product. However, once the playground becomes fertile enough for the wolf to play and wreak havoc, anything touching your body at that time could cause a horrible reaction.

Now that I have been formally diagnosed with lupus, I am very cautious with new products. I try to go without makeup whenever possible. I no longer dye my hair. I look for natural products when possible. I do skin tests with everything, every day because I never know when my body will react to something. Since I cannot do a blood test on myself at home to see if my immune system is in overdrive, these are the precautions I have to take every day to ensure I have a drama free day.

Going back to the quote from The Autoimmune Epidemic, if you are susceptible to autoimmune disease, be careful. Perhaps you want to look around and check for autoimmunity in your family. Anyone with Rheumatoid Arthritis, Type 1 Diabetes, Lupus, Thyroiditis, etc.? You might want to proceed with caution.

For a list of autoimmune disesases check out the List of Autoimmune and Autoimmune-Related Diseases at AARDA.

Here’s Something You’ll Really Like

Carla Ulbrich is the Singing Patient and she has a website called the singingpatient.com. She has a wonderful witty article here entitled Winning the Hair battle with lupus. You gotta read it and laugh because she really goes on about prednisone — I hear you. When it comes to doctors, she has that down too with her song “Sittin in the Waiting Room.”