One of the unfortunate facts about re-pigmenting Vitiligo patches is that one normally needs a few melanocytes to be present for “healing” or repigmenting to begin. The last remaining melanocytes are typically gathered in the hair follicles on our bodies and we have very few on on our hands, feet, elbows and knees. Continue reading
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.
I have known Heather and her husband for many years and if asked I would have seconded Heather’s nomination, This is great news.
One of our challenges as a UVB Narrow Band supplier are Insurance Companies like AETNA that consider UVB NB to be “investigational” when used at home.Their Clinical Policy Bulletin CBP 0422 Policy dated 4/22/2011 reads “Aetna considers home phototherapy experimental and investigational for the treatment of vitiligo because there is a lack of evidence regarding the safety and effectiveness of home phototherapy for this condition.”
You can read the AETNA policy at their website:
AETNA should evaluate studies such as http://ajwin.us/vithappens.com/index.php/2010/08/narrow-band-uvb-phototherapy-in-150-patients-with-vitiligo/
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://ajwin.us/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.
I always enjoy reading the “President’s Message” from the NVF (National Vitiligo Foundation). Dr. Ray Boissy, the NVF president prepares this every quarter. The one issued last week was particularly interesting in that a high school student is the focus of the message. I think you’ll be surprised as you read on. Continue reading
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.
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
One of the reasons I have been following this news is rather selfish in that the study does require the use of UVB Narrow Band and we (Amjo Corp) are a leader in the sale of UVB Narrow Band Products for the treatment of Vitiligo, Psoriasis, Eczema and many other skin challenges such as CTCL, Mycosis Fungoides and some forms of Pruritus.
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
It was not that long ago that I published a video done by Lori and April Mitchell about April’s life with Vitiligo. That video can be seen by clicking <here>. I was visiting my Facebook page today and found that Lori had posted another video at Blip TV where Lori and April discuss people, their differences and similarities.
Vitiligo affects different people in different ways. Continue reading
UPDATE (Available Now Click Here> We are introducing a new UVB Narrow Band panel suitable for the treatment of Psoriasis, Vitiligo, Eczema and a host of other skin challenges and diseases. Weighing in at sixteen pounds, this new panel is light, portable and will travel very well.
This new product will use the newest of the UVB Narrowband Lamps released by Philips, the world leader in UVB Lamps for phototherapy. The new PL-L-36W/01/4P lamp allows the construction of a highly energy efficient light weight phototherapy system. We are truly thankful to the folks at Philips for creating this new lamp. This lamp style (PL36) has been around for a while and the visible light (non UV) form of this bulb has been used for many years in products to treat Seasonal Affective Disorder. You can see many of these products at Amjo’s www.sadlight.com and www.lightenupshop.com websites. These remarkable lamps generate twice the power of the TL20W/01 lamps used in our two foot tall (nominal) systems.The UV Output from this new Handisol II will be slightly higher than our eight lamp Panosol II UVB NB 2′ Panel! This will allow shorter treatment times and better penetration for Plantar and Palmar (Foot and Hand) Psoriasis.
The new Handisol II UVB NB panel weighs in under 20 lbs. We fully expect that this unit will be one of our largest revenue producers in 2011.
Effective home phototherapy treatment of psoriasis, vitiligo, and other skin diseases. Handisol II lets you treat the most difficult areas quickly and effectively.
- Exclusive Controlled Prescription Timer® assures control of your treatment regimen
- High output for quick, effective treatment
- Large window and reflective backing behind lamps provides coverage area of over 2 square feet
- Key lock to prevent unauthorized use
- Slim, lightweight, and portable makes storage and setup easy
- Clear acrylic shield for easy cleaning and optimum light energy
- Shipped fully assembled, ready for immediate use.
|Electrical Rating||115V – 60 Hz
1.2 A with Grounded Plug
|Dimensions||25″ x 18″ x 3″
64 cm x 46cm x 8 cm)
|Lamps||4 PL36 Style UVB 311
UVB Narrow Band Lamps
|Weight||16 lbs (7 kg)
Shipping Weight is 22 lb or 10 kg
Clinuvel, an Australian company is doing research on the use of an implantable drug and the use of UVB Narrow Band. Here’s an interesting video found on YouTube. This video and others can also be found at the www.clinuvel.com website:
From the Clinuvel website:
In August 2010, Clinuvel announced that it would commence a pilot Phase II study (CUV031) to evaluate the use of its first-in-class drug SCENESSE® (afamelanotide) as a repigmentation therapy in nonsegmental vitiligo. As this is a new program, the company has established this webpage to serve as a portal for all information relevant to this study and vitiligo more broadly. Please note that Clinuvel is unable to respond to individual requests to be involved in the CUV031 study.
Narrowband ultraviolet B (NB-UVB) phototherapy is currently seen as the phototherapy of choice for nonsegmental vitiligo patients.
Vitiligo is an acquired depigmentation disorder that is characterised by a chronic and progressive loss of functioning skin and/or hair follicle melanocytes. Melanocytes are found in the epidermal layer of our skin and produce melanin, the pigment that gives colour to our skin and hair. The loss of epidermal melanocytes in vitiligo leads to a loss of melanin pigment which leaves the affected area white.
The most common subtype of vitiligo, nonsegmental vitiligo, accounts for 85 to 90 percent of cases. It is believed to be caused by the immune system attacking and destroying melanocytes causing a loss of pigment and leading to the loss of colour.
NB-UVB uses specific wavelengths to activate melanin in vitiliginous lesions of the skin. This therapy is known to effectively suppress the local immune response and accelerate the maturity of melanocytes in the area around hair follicles, which act as melanocyte reservoirs, leading to repigmentation of the skin.
Although NB-UVB is one of the leading therapies for nonsegmental vitiligo, the drawbacks are numerous. Chronic effects of NB-UVB may include skin aging and photo-carcinogenesis, which may lead to skin cancer; although these long term effects are yet to be fully investigated.
It was at an AVRF (American Vitiligo Research Foundation) meeting in perhaps 1999 or 2000 that I first met April and her Mom, Lori Mitchell. It was the first conference that we “Amjo Corp” attended as an exhibitor, Amjo was a just a year old at the time. Lori had just completed a book called “Different Just Like Me”
Recently Lori created a page on FaceBook at
Watch a video that Lori created