This is a new program, and only members of the National Vitiligo Foundation (Free Membership) can take advantage of this new program that offers discounts as follows:

• Panosol Products – 10% Discount.
• Handisol II Panel – 10% Discount
• Foldalite III – Flat Rate $500.00 Discount.
• Hand/Foot Units – 10% Discount.
• Dermalume 2X Wand – 10% Discount
• Dermalight 80 Hand Held Wand- 5% Discount.

To register with Amjo for this discount please:
Visit http://www.homephototherapy.com/nvf/

We hope to see you there!

Good Luck

Chris Cane
chris@amjo.net

For Psoriasis one of their documents reads “For Ultraviolet Cabinets: >Covered for selected patients with generalized intractable psoriasis. Using appropriate consultation, contractor should determine whether medical/other factors justify treatment at home rather than at alternative sites, e.g., outpatient department of a hospital.”

Cigna and Aetna also exclude coverage for UVB Narrow Band Systems for the treatment of Vitiligo.

Related articles:

• http://www.vithappens.com/?s=aetna
• http://www.vithappens.com/?s=cigna

Areas such as the face, chest, arms and legs where most of us have lots of hair follicles tend to repigment first regardless of the treatment type, whether it be a corticosteroid such as Protopic or Elidel or UVB Narrow Band. Small spots tend to start around hair follicles and over time during treatment, the spots get larger and larger and if all goes well they will begin to overlap and the patches fill in. Some folks call this freckling and those with a sense of humor sometimes laugh and call it frecklage!

There are some people who do have success repigmenting their hands or feet and to be honest, I don’t know why that happens. I do know that if the spots are small that some repigmenting occurs at the edges of a lesion and overtime the spot may fill in.

I’d be interested in hearing about your experience, perhaps you could comment below.

Heather Marsh

Heather has been volunteering with the National Vitiligo Foundation for several years now. As a volunteer she has spent many hours creating thousands of mailings to keep NVF members informed of Foundation activities and progress, and to help with fund-raising for the Foundation

Heather works as a special education teacher in the greater Cincinnati area. She is very passionate about finding a cure for Vitiligo and other skin diseases. She has seen firsthand how skin diseases hurt the self-esteem and psychological well-being of children, close friends, and even her own husband. Stories of children being discarded or abused by parents, or the children committing suicide because of their physical appearance, are part of what motivates her to take action and be involved. Heather believes that until we find a cure, providing support and educating the public to drive awareness will help save many lives and help bring acceptance for millions around the world.

Chris Cane
The UVGuy

Typical Woods Lamp

One of the unique things about Vitiligo is that the areas where the pigment has been lost because of Vitiligo glow or fluoresce under a Woods Lamp sometimes called Black Light. A typical Wood’s Lamp generates UV light at 365 nm (nano-meters) and can be used for many applications. When you’re watching those police shows on TV where forensic teams look for blood and other body fluids such as sperm, you are actually seeing the use of a Woods Light.

Professor Robert Wood

A little back ground. The Wood’s Light is named for Robert Wood. Professor Robert W. Wood is is undoubtedly the “Father of Ultraviolet Photography”. His work in the early 1900′s led to the use of UV light for forensic and medical skin and eye detection.

He was the first to record the ultraviolet fluorescence phenomenon which led to the common usage of UV light today for skin and forensic inspection. You can read a little more about Professor Wood at my www.woodslight.com website.

The Wood’s Lamp is used to detect many things today such as:

• Ringworm
• Fungus/fungal infections
• Corneal Scratches.
• Foreign bodies in the eye.
• Vitiligo.
• Blocked tear ducts.
• Acne.
• Erythasma
• Tinea versicolor
• Microsporum Canis
• Criminology (for emergency rooms)
• Scabies.
• Alopecia
• Porphyria
• Bacterial Infections.
• Many other skin conditions.

Note the bluish glow of the area with Vitiligo that is barely visible under normal light. Image borrowed from Vitiligo Zone

The user should take several precautions such as advising you not to look directly in the ultraviolet light or providing you protective goggles when examining the face. The Woods Lamp examination holds no risk and you won’t feel anything during the procedure.

Your doctor or healthcare provider will ask you to thoroughly wash or clean the area to be examined. Many creams, ointments and soaps contain materials that may fluoresce under black light so they must be eliminated. The inspection must be done in a darkened room. The skin with Vitiligo will glow whereas your regular or normal skin will not react or glow.

Fluorescence is not simply reflected light. Certain materials react to UV (Black Light) and create light when they react or “fluoresce”. Believe it or not, some folks in places like Arizona and the Southwest use black lights to search for scorpions. Yes! Scorpions glow or fluoresce under black light. Here’s a video you can watch of someone hunting scorpions with a black light. <Click Here>. Many minerals fluoresce under black light and many rock hunters will use black light to search for certain materials or minerals.

The company that my wife and I own for many years only sold UVA, UVB and UVB Narrow Band Systems at our www.HomePhotoTherapy.com website and as time went by we got more and more calls on wood’s lights and UVA Black Lights and we decided to create the www.WoodsLight.com website and begin selling woods lights and black lights for a wide range of applications. This has been one of our more successful spin-off websites.

We now carry

• Hand Held Woods Lights
• Floor Stand Systems
• a Small Battery Powered unit
• Woods Lamps for use in  Hospitals
• Export models for use outside the USA in 220V Countries

Our web store for woods lights can be found at:
http://www.amjoshop.com/category-s/41.htm

This really is to put it mildly total crap! There are many studies showing that Vitiligo patients are helped with home phototherapy. Home users over the long run are typically more likely to be “compliant” because they don’t have to go to a clinic three times a week for a very short treatments over a very long time. The burden of visiting a clinic or doctor’s office week after week is costly, and many employers will not tolerate their employees interrupting their work day three times a week.

In a psoriasis study the conclusion by the authors was “Ultraviolet B phototherapy administered at home is equally safe and equally effective, both clinically and for quality of life, as ultraviolet B phototherapy administered in an outpatient setting. Furthermore, ultraviolet B phototherapy at home resulted in a lower burden of treatment and led to greaterpatients’ satisfaction.” In my years of experience, the same is true for people with Vitiligo. Read more at http://www.vithappens.com/index.php/2010/07/comparing-home-to-outpatient-uvb-phototherapy

Let’s hope that AETNA and CIGNA that has a similar policy come out of the dark ages soon.

From the NVF President’s Message April 2011 <Click Here>

MEMBER NEWS: One great advantages of the NVF is connecting members in our community so they can help on another. A few months ago one of our members, Brendan Muha, a high school student doing research on Vitiligo for his science fair, contacted the National Vitiligo Foundation for assistance. His project was to correlate the occurrence of Vitiligo with various personal traits. This was actually a novel idea and his questionnaire was sent out to other NVF members. His questionnaire contained the following

1. What age are you?
2. What color hair do you have?
3. What color eyes do you have?
4. Are you left handed or right handed?
5. When did you develop vitiligo?

Brendon received a tremendous response from our membership and as a result he stated “The science fair was amazing I earned first place and qualified for the regional science fair. However, the research did not show any overwhelmingly obvious results. Vitiligo occurs equally among all patients no matter gene characteristics.” I personally would like to thank

Brendan for his pursuing this interesting project and brining awareness of Vitiligo to his school. I also like to thank the NVF members who sent in the questionnaire and provided information and support for Brendan. Below are his ABSTRACT & CONCLUSIONS.

ABSTRACT: Patients with Vitiligo usually don’t understand why they have contracted the disease. They don’t know what genetics or traits have played a role. Generally, Vitiligo is passed on from one generation to the next; however, it is sometimes contracted out of what seems to be nothing. This is considered a scientific anomaly. After this experiment, we still may not know the direct traits involved in Vitiligo. We hope that we will be able to see the certain traits involved in Vitiligo. Vitiligo is a disease that causes the loss of pigmentation and the addition of white spots to the skin. Vitiligo occurs all over the world in one percent of the human race. Yet, in a country like India Vitiligo is heavily researched because it has similar characteristics to those of leprosy. Individuals are cast out of society and are plagued with Vitiligo for their entire life. It has no cure and needs more research. Although Vitiligo occurs equally in the male and female sexes traits are still expected to play a role. The traits tested are the age of the candidate, the color hair, the color eyes, left, or right handed, and when vitiligo was developed. Data was received from the National Vitiligo Foundation and was used in this retrospective study. It was observed and specific data was gathered. The information we gathered are viewed on bar graphs, pie charts, and line graphs for specific data. We hope to prove our hypothesis correct in that we will conclude that vitiligo is more apparent in certain traits.

CONCLUSION: The study yielded many results. In hair color, left and right-handedness the incidence of each matched that of the general population. However, in eye color the incidence of blue and green eyes among vitiligo patients was much greater among the vitiligo patients. Green and blue eyes contain less melanin, which produces pigment, or eye color. It is apparent there is a correlation between persons with vitiligo and persons with lighter eye color. Perhaps further study is warranted to determine whether eye color can predict this pigment disorder in the general population.

Dr. James J Nordlund

Dr. Boissy

This year Doctor Raymond Boissy and Dr. James J. Nordlund both here in Cincinnati published a paper entitled “Vitiligo: current medical and scientific understanding.” It was published in the Giornale Italiano di Dermatologia E Venereologia in February of this year.

Abstract:

Vitiligo is a relatively common acquired skin depigmentary disease with a complex presentation, therapy, and etiology. Both the prognosis and therapeutic response for patients with vitiligo is unpredictable. Multiple current therapies exist however the efficacy of these are not optimal. The cause of vitiligo appears to be a combination of genetic effects in both the immune system and the melanocyte itself with a precipitating factor instigating their interaction and resulting in the melanocyte destruction. Headway is being made in understanding the etiology of vitiligo that should culminate in new and improved therapies.

The entire paper can be seen at http://www.uvbnarrowband.com/wp-content/uploads/pdfs/2011-Boissy-Nordlund-G-Ital-Dermatol-Venereol.pdf

I did post a little about this with a Video in January <Click Here>

The text that follows is borrowed from an article at PharmaLive

“Drug trial in skin disorder affecting 45 million globally to commence in USA, Europe.

A new treatment for one of the world’s most distressing skin disorders is about to commence trials across the USA and Europe. The USA’s Food and Drug Administration (FDA) has agreed to allow a pilot trial of the new drug SCENESSE® (afamelanotide) to determine whether it can help repigment the skin of patients with vitiligo.

Vitiligo is an autoimmune disease which causes patchy loss of skin color in ‘lesions’ which spread over the body. Onset of the disease can be sudden and lesions can spread quickly. Vitiligo affects all races but is most visible in individuals with darker skin. Global studies have shown vitiligo can have a significant impact upon an individual’s quality of life as their skin inexplicitly and dramatically changes color.

SCENESSE®, an injectable which mimics the body’s natural ability to activate the skin pigment melanin, will be trialled in nonsegmental vitiligo; the most common form of the disease which affects over 45 million individuals globally.

The drug will be tested in combination with narrow-band ultraviolet B (NB-UVB) light therapy, a recognised treatment but one which takes up to 18 months of twice- or thrice-weekly clinical visits to return pigment to the skin. The goal of the trial is to determine whether SCENESSE® will reduce the dose of radiation (NB-UVB) and the time required to reactivate skin pigment producing cells in vitiliginous lesions.”

You can read the entire article at http://pharmalive.com/News/index.cfm?articleid=765588&categoryid=21

Vitiligo affects different people in different ways. Every day on the phone I’m chatting with people who have Vitiligo and people whose kids have Vitiligo and sometimes it’s a real challenge to have a reasonable conversation. Many of the people are deeply affected by their Vitiligo and others are very nonchalant. The nonchalant are seem well adjusted and are looking to treat their disease and re-pigment areas of their body which for the most part are visible to folks they are talking to. Others are in tears or close to it and are emotionally involved with their disease or that of their children.

Many parents that I chat with are too emotionally connected to the disease and its effect on their child. It’s easy to see that moms and dads who are too emotional are probably making their child feel different rather than the same.

April Mitchell is one of those kids (now 19) whose Mom took the right approach and found ways to discuss April’s differences while focusing on the real April, beneath the skin. April makes reference to a quote by Eleanor Roosevelt who said “No one can make you feel inferior without your consent.” With Lori’s help April has learned that she is the same as everyone else with one simple difference as she has two-tone skin.

I met April and Lori in 1999 or 2000 at a Vitiligo conference just after Lori had written and illustrated her book “Different Just Like Me“. April and Lori were being interviewed by a local news channel near Tampa.

April Mitchell on Blip TV

April and her Mom discuss Vitiligo in an interesting Video.

See http://www.blip.tv/file/4772005