Medical Info on Vitiligo

Saturday, June 7, 2008

Medical info on what Vitiligo really is by the National Institute of Health
Vitiligo Skin Disorder

In a study appearing in the March 22 New England Journal of Medicine, scientists supported by the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) have discovered a connection between a specific gene and the inflammatory skin condition vitiligo, as well as a possible host of autoimmune diseases.Vitiligo is a chronic condition in which melanocytes (the cells that make pigment) in the skin are destroyed. As a result, white patches appear on the skin in different parts of the body.

Similar patches also appear on both the mucous membranes (tissues that line the inside of the mouth and nose), and perhaps in the retina (inner layer of the eyeball). The hair that grows on areas affected by vitiligo sometimes turns white. The researchers began a search for genes involved in vitiligo almost a decade ago with the help of the Vitiligo Society in the United Kingdom. “In the beginning we were looking for multiple family members with vitiligo,” says Richard Spritz, M.D., director of the Human Medical Genetics Program at the University of Colorado at Denver and Health Sciences Center and lead investigator for the study.

The researchers sent a questionnaire to members of the society, asking them about their own vitiligo and whether other family members were affected. As part of the questionnaire, they also asked about other autoimmune diseases. What they learned was that vitiligo was “very highly associated” with a number of other autoimmune diseases, mostly thyroid disease, but also pernicious anemia, rheumatoid arthritis, psoriasis, lupus, Addison’s disease, and adult-onset autoimmune diabetes.That finding prompted the researchers to study families with multiple affected members and to look for similarities in genes among those who were affected.


By searching the genome, they discovered a gene, NALP1, that was key to predisposing people to vitiligo and other autoimmune diseases, particularly autoimmune thyroid disease, says Dr. Spritz. “We know that about 20 percent of people with vitiligo also get autoimmune thyroid disease, and this gene may be involved in mediating both of those,” he says.Dr. Spritz says the implications of this finding are exciting. The identified gene controls part of what is called the innate immune system, which is our body’s first defense against infection, he says. “When we are attacked by viruses or bacteria, the innate immune system stimulates the inflammatory pathways and calls the rest of the immune system to action. NALP1 is probably a receptor for bacterial or viral signals.

We don’t know what these signals are, but now that we know what the gene is, we can use that knowledge to search for the signals that trigger autoimmune disease.”“All autoimmune diseases involve the interaction of multiple genes and environmental triggers,” he continues. “You are born with your genes, but you are not born with these diseases. Something happens. We don’t know what the triggers are that start these diseases, but if we did, maybe we could avoid them or even block the process. In fact, it may even be possible to actually stop the autoimmune disease,” he says.The most immediate application of this research might be for the disease that began the research: vitiligo. Doctors usually treat vitiligo with ultraviolet (UV) light to stimulate skin repigmentation.

Scientists also know that there is one medication available (approved for treating rheumatoid arthritis) that blocks an inflammatory pathway thought to be controlled by NALP1. The possibility of combining a drug with UV light to improve vitiligo treatment is intriguing, and Dr. Spritz is now interested in finding out more about how the medication might affect people with vitiligo.NIAMS Director Stephen I. Katz, M.D., Ph.D., calls the discovery of the NALP1-autoimmunity connection an important advance in the understanding of autoimmune diseases that collectively affect an estimated 15 million to 25 million Americans.

“The more we understand about these diseases, including the genes that predispose to them and the environmental factors that trigger them, the closer we come to better treatments and even preventive measures,” he says.Additional support for this research was provided by the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the U.K. Vitiligo Society and the National Vitiligo Foundation.

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the Department of Health and Human Services’ National Institutes of Health, is to support research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.


For more information about NIAMS, call the information clearinghouse at (301) 495-4484 or (877) 22-NIAMS (free call) or visit the NIAMS Web site at http://www.niams.nih.gov.The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

From U.S. NIH

Another Disclaimer so no one is confused

This Blog is about sharing with you my feelings, opinions and thoughts of living with the pigmentation disorder- Vitiligo. There will be days I talk about it and other days you will get to get a feel for my live and in person personality- (always real and at times organic humor comes out)

IT is not always a Discovery channel vibe of my life turning white there is more to me than white spots and alot of it for those that have never met me. :-) Since I am in the entertainment industry this is a great platform to laugh, cry, bitch, moan, share joy, happiness, knowledge and just darn great therapy for a free-lancer with no agent yet and a whole lot of damn amazing talent inside of me ready to unleash! Yes, should have done it a long time ago but I wasn't in that space or place.

Now I am and I thank you for stopping by and hope you will check in to continue this never boring journey of life and vitiligo -confessions of an African-American female, over 35, size 10, brown eyes, white spotted skin, curly,nappy and indifferent hair and a size 8.5 to 9 shoe. Body measurement are obvious.....:-)

so lay back or get close and personal to enjoy and engage my blog: Brown Butterfly Turning White Maia's Metamorphosis, 24/7.

The SKY IS TURNING WHITE THANKS TO TORI SPELLING AND HUBBY DEAN POLLUTING THE AIR


FYI- My buddy Lucy B alerted me that there was a typo for her website it has been corrected on yesterday's blog and today. To learn more about Lucy's Jazz band and this amazing vocalist go to the corrected website: http://www.nylaee.info/

DISCLAIMER:

DO REALIZE THAT I TRULY CANNOT HOLD BACK MY CREATIVE AND VIVACIOUS PERSONALITY ON MY BLOG, SO THERE WILL BE DAYS WHEN YOU WILL GET A FEEL FOR IT WHERE VITILIGO MIGHT BE RUNNER UP TO WHATEVER ELSE I AM FEELIN FOR THE MOMENT. :-)


Okay here is the deal on the title of my page, "Tori Spelling..." This morning about 10:00am,I was driving down Fairfax by Venice Ave. and looked up to see a small plane flying circles and weaving in and out of the clouds as if it were in an air show. HOWEVER, when I glued my eyes to the sky, what I was seeing was the name Tori & Dean being engraved in the beautiful blue sky. My question to my friend Audra, was WHY, WHY, and WHY?????

Yeah, that showcasing of love is romantic and nice, but it's a waste of gasoline and the chemtrails are cool to look at but certainly not nice to breathe or good for our skin once they land here on the streets of LA. Now, I am not a Scientist but the toxins go somewhere and it ain't rocket science to figure out who also helps celebrate Tori & Dean's love. All of us unsuspecting people who can think of better ways to spend thousands of dollars in this recession. Did I say spend? I meant save in this recession.Hey, I thought Tori and Dean could have sponsored a ticket to a less fortunate couple who need to travel for a medical reason or to see family members and cannot afford to do so. Sounds like a nice thing to do.

If they want to advertise their love (like the tabloids don't do it enough) buy a billboard or by some television time for a commercial. This is all about green these days, and no one is perfect but damn can we try and think it out first?Just had to vent, and this time I was turning red not white. :-) I need to contact http://www.nicolebitchy.com and perez hilton and get their thoughts on celebrity contamination of our precious skies for love!

Today, I'm featuring my new friend, Lucy B's personal testimony of living with vitiligo. Check out more about her, see her picture and learn more about this amazing jazz vocalist on her website. (girlfriend can "sang" ) :-) http://www.nylaee.info/


Hola Maia,

Thank you for such a nice blog about our lunch. I had a great time as well. This is the first time I have had a chance to talk to someone who can relate on a real level what it is like to live with Vitiligo. I don't think I have had it as bad psychologically, because I was afflicted with it when I was a child and my parents never made me feel different because I had it.

They were concerned and we tried many things to treat it, but I always felt loved and secure. I think it gave me the time to get used to it and by the time I reached adulthood, I had accepted it, embraced it and do my best to live as full a life as possible despite the stares, whispers and discomfort people may feel when they deal with me. As discussed, attached is my head shot that shows my vitiligo in performance. I only cover my face when I perform or go out in public, and 'what you see is what you get' is my attitude about everything else. I feel the person that I am and the blessing of my music is far more engaging than the colors of my skin.


I could not find the article I mentioned to you about the treatment being different for black people as opposed to white people, but below is close to what I found. You have to purchase the article or perhaps it can be found in the library. take a look see and let me know what you think. My website is www.nylaee.info. I am the lead vocalist and Mychal Andrews is my musical director and the supportive boyfriend I mentioned to you. When I met him about 10 years ago, he never made me feel different or weird about it. He accepted the vitiligo in me and even encourages me to go out without make-up( I have done it a few times for a quick trip to the market, but I am not ready to go and socialize without make-up) He always complements me on my color and I appreciate him for that.

That's it for now. ARTICLE:From the San Gallicano Dermatological Institute, Rome, Italy,a and the University of California Medical School, San Francisco, California.Available online 24 June 2003.

Racial variability in skin function is an area in which data oftenconflict. Understanding and quantifying racial differences in skinfunction are important for skin care and the prevention and treatment of skin diseases. A key feature that characterizes race is skin color: Is deeply pigmented skin different from fair skin in terms of responsest o chemical and environmental insults? Is skin care the same? Are there different risks among racial groups of developing a skin disease afterexposure to the same insults? The interpretation of pathophysiologicphenomena should consider not only anatomic and functional characteristics of ethnic groups but also socioeconomic, hygienic, and nutritional factors. This article reviews and discusses recent findings. (J Am Acad Dermatol 2003;48:S139-42.)Lucy Blanco http://www.nylaee.info/

stay tuned for my friend Lucy

I had a terrific lunch with a new friend of mine, Lucy B. yesterday. She is one of millions of Americans that has vitiligo. Lucy is an amazing jazz singer and I asked her to share her experience on this blog. So we will look forward to it soon.We had lunch to discuss her being my first official guest on my tv show being taped on June 19th, 2008. Although, Lucy's vitiligo is advanced, we share so many things incommon living with vitiligo.

When we walked into the cafe on Wilshire, she asked me if I wanted to sit in the sun and my eyebrow raised; I thought "how could she want to sit in the sun and expose the less pigmented skin to the dangers of the sun rays?"So, I asked her and go figure, like the rest of the planet, she said "girl I love the sun, I could sit in the sun all the time". However, we agreed that if we don't add sunscreen every two hours, we can blister and that is so NOT cute or healthy!Great thing to find out is that life doesn't stop for people with vitiligo.

We are human and function like everyone else except that we can easily distract people with the blotchiness of white spots, particularly if the skin is brown to very dark.Lucy told me she has a supportive boyfriend. For women who have to live with Vitiligo, there are times that we might wonder if a man could genuinely be attracted to us physically and handle the affects of the pigment change. Some will and some won't, we just have to discern the truth from their behavior. Isn't that what's generally done anyway with or without vitiligo?Well, I just wanted to share a little about Lucy B. and will read from her soon.

Rainy Nite In Cali.

For all those that are not familiar with Southern California--IT'S RAINING !!!!! It rarely rains in southern California , like the lyrics of Toni, Tony , Tone song "It never rains in sunny Southern California.." Of course along with the rain comes mudslides, ruined homes and a wet, slimy mess! But AH! it is such a relief from the pollution, the sun (some days it is my best friend and other days my worse enemy) and at times, yes the People of Tinsel Town. U know what I really mean! :-)


Today, noticed a teeny weeny white spot on the right cheek of my face (need to make that one clear cause there are no spots on the "lower back cheeks" but it can happen). :-) Many of my close friends know I moved out to LA to pursue my career in TV, with all odds against me, pigment, age and little demand for ethnicity, my family and friends know I am on a serious mission to realize my dreams while educating those that aren't familiar with Vitiligo.Lately, I have been asked if I know about Lee Thomas, the African-American reporter from Detroit who was on 20/20 and Larry King discussing his pigment disorder. YES, YES I do and if you run into him tell him I want to interview him. :-)

He has told his story to Larry, now I am ready to tell mine. The only difference between Lee and I, is that I really don't want to have to apply make up on my face (only lightly) nor hands,. Am not feeling that caked on and heavy make-up application on face or hands. Lee doesn't apply it on his hands and neither would I. You know that Tammy Faye Baker look? Just not cute.However, anybody working in front of the camera always must wear make-up unless you are a Seventh Day Adventist like a popular Anchor in Atlanta. She truly has natural beauty so she lucked up. (at least that is what I heard).

I am a City girl and I love make-up, and all the material things that Hollywood has to offer but U must know I am a City (Chicago) girl that has a heart of Platinum and looks forward to engaging Hollywood and the world in conversations and dispelling the myths of Vitiligo and Michael Jackson's Glove. LOL
Posted by Maia at 5:17 PM 0 comments

Refreshed and Re-Determined

Just returned from a great visit to Ft. Lauderdale and it was hot, humid and beautiful! One thing about having vitiligo is, I have to be careful about being exposed to the sun during peak hours. The pigment that has turned white, if exposed to high rays can burn, blister and can result in Cancer.Our skin is the largest organ on our bodies and is there to serve as some protection from the sun.

SO, if pigment is no longer there, then we are "naked" to the sun and it can be a dangerous road to go down. And of course, I am one of millions of people that love to soak the sun all up. NOT ANYMORE, there are times that I am on pins and needles tip-toeing around trying not to burn and making sure on an average day out running errands that I carry Sol-bar, a leading sun block for people with vitiligo.


Most women carry hand lotion, I carry sun-block 38 and it has lot's of zinc which is a good nutrient for the skin. While adoring my beautiful brown, there our times when I am prepping myself for a eulogy for my brown skin that will one day turn all white (if I decide to expedite it). Part of me looks in the mirror everyday and says to myself, "self you are beautiful brown and you will be a beautiful white cause the core of you is radiant from within" and then my evil twin says "yeah girl no more tropical tans for you, just going to have to be exotic on the inside".

That is a battle for me, anyone can be exotic but for me when I see men and women of color with beautiful skin tones and radiant glows of red, copper and bronze skin, I think...DAMN! I got to get rid of all my bronzers and brown makeup and purchase all new colors and shades of white. Now that is not going to be an easy transition for me, since I have known brown all my life and love the color tones of my pigment. However, this experience is a test to my inner character and opens the doors to new life dimensions.I am refreshing and redetermining that I will make this transition work for me in all good ways and still continue to love my brown.