I was visiting the www.NVFI.org website the other day and came across an interesting radio discussion with Dr Jean Burgess and Dr Ray Boissy of the NVFI discuss Vitiligo with Angela Carlton at Clemson University ETV Radio
Clemson University ETV Radio “Your Day” Audio Broadcast on Vitiligo (Provides an Excellent Overview!) Please < CLICK HERE > to listen to the broadcast.
You can visit the NVFI Site at http://nvfi.org/pages/media_info.php to learn more about the NVFI in the news.
My Book
I felt like writing about something that has nothing to do with Vitiligo. Like many of us, we all wear diferent hats on different days. I became the UV Guy late in the last millennium when Randy Salter of Vitiligo Support International introduced me as the UV Guy as I was about to make a presentation on “What is UVB Narrow Band” at a joint AVRF/VSI Conference in Florida.
Anyway I digress, I do that a lot.
The reason for this post is to share with you that I did write a book with nothing to do with Vitiligo, UVB or any other part of my professional life. My daughter Amy (The “Am” part of Amjo) asked me repeatedly and more than once several times to sit down and write down some of the stories that I tell about my life. The thought was daunting and I procrastinated for many years until one Christmas when Amy gave me a book called “I Thought My Father was God.” As I read the first story entitled “The Chicken” I had an epiphany which is a fancy word for “brain fart”. Here’s the first story from the book “I thought my father was God” in its entirety, Continue reading
Lee Thomas
Vitiligo is an acquired chronic skin disorder of pigmentation, which is characterized by white patches due to loss of pigment producing cells in the skin. These white or hypo-pigmented white patches are the hallmark, and the main Vitiligo symptom. These white patches are frequently symmetrical and their size usually keeps increasing with the passage of time. This is associated with a significant loss from the epidermis and also from the hair, of functioning melanocytes. Continue reading
Today I received the President’s message email from Dr. Ray Boissy of the NVFI (National Vitiligo Foundation) www.nvfi.org.
Ray attended the First Vitilgo World Congress last month and reported:
The First Vitiligo World Congress (VWC 2010) was held in Milano, Italy on September 23-25 sponsored by the Istituto Scientifico Universitario San Raffaele. As stated by the chair Prof. Santo Raffaele Mercui, “the goal of the congress is to focus on recent developments in our understanding of the disease, touching on such different research areas as genetics, endocrinology, immunology, photobiology and psychology”. Day 1 and 2 focused on scientific and clinical information and Day 3 was devoted to patient information. The National Vitiligo Foundation attended the VWC 2010, represented by Raymond E. Boissy, President and Randall Marsh, NVF Board Officer. This meeting was truly a milestone for the Vitiligo community with more that 100 scientists and clinicians participating. Outcomes from this meeting will greatly facilitate the understanding of and care for this disease. Continue reading
Here’s a challenge to all of you dermatologists out there to consider studying the effects of UVB Narrowband, not only for treating Vitiligo but also the effect of UVB Narrowband on Vitamin D levels. An Irish research team did this and found that that the average patient undergoing UVB light therapy more than doubled their blood levels of vitamin D by the end of the treatment period, which most completed in about 50 days. All of them reached vitamin D sufficient levels, the researchers report in the Archives of Dermatology.
The original article can be found at http://archderm.ama-assn.org/cgi/content/short/146/8/836
Perhaps similar studies could be done on people with Vitiligo and the results could help those people who are Vitamin D deficient.
I realize that this is off topic but comments and ideas are welcomed.
They say that patience is a virtue.
For many people with Vitiligo patience is a necessity.
There are not enough dermatologists here in the USA. The AAD (American Academy of Dermatology) does influence our universities and from what I’m told recommends maximums for number of med students in dermatology in each school, thereby limiting the number of derms and maximizing the salaries/incomes for the ones lucky enough to graduate.
A side effect of this is patients need patience while they are waiting for their first and possibly subsequent appointments. Over the years, I have spoken with hundreds and hundreds of folks who are waiting sometimes up to three or more months before they can get into see a dermatologist. Many times, once they get there they are often told that it’s only a cosmetic condition and not much can be done. Why a derm would say such a thing is beyond me. This is a disease that can play with the mind and can cause a loss of self esteem with many people. Not everyone with Vitiligo is comfortable in public with Vitiligo.
I also believe that many dermatologists shy away from treating Vitiligo because the treatments typically take months before the white areas begin to re-pigment and they and their patients become discouraged. Diseases, such as Psoriasis, Eczema and some others respond within a few days of the initiation of treatment giving immediate hope to the patient. With Protopic, Elidel and UVB Narrowband (UVB311) It’s unlikely that re-pigmentation will begin in less than 3 months and the progress of re-pigmentation can be slow. The only ‘instant’ remedy is the use of make-up or skin dyes to mask the white areas. On hot summer days, perspiration can be an issue causing the makeup to transfer to the nice white shirt or blouse you put on a few minutes ago.
The treatment of Vitiligo takes time and I’m afraid that the patient does need to be patient.
What have been your experiences?
Indications are that UVB Narrowband is an effective and safe treatment for Vitiligo, Psoriasis and other skin challenges. There are two retrospective studies that I have found that show that UVB Narrowband is a very safe treatment. That’s not to say that there is no risk, these studies show that the risk may be minimal. The decision to choose UV treatment is a medical decison between you and your doctor. (Read our disclaimer Click Here)
CLINICAL REPORT (Weischer, Blum, Eberhard, Rocken and Berneburg)
No Evidence for Increased Skin Cancer Risk in Psoriasis Patients Treated with Broadband or Narrowband UVB Phototherapy:A First Retrospective Study <Click Here>
REVIEW: (Lee, Koo and Berger)
UVB Phototherapy and skin cancer risk: a review of the literature. <Click Here>
Abstract
Background
UVB phototherapy is a common treatment modality for psoriasis and other skin diseases. Although UVB has been in use for many decades, many clinicians are hesitant to use this type of phototherapy because of concern over increasing the skin cancer risk. Over the past 20 years, numerous studies have been published examining this issue, but a consensus or analysis of the skin cancer risk is required for the dermatologist to make an educated risk–benefit analysis.
Objective
To assess the risk of skin cancer associated with UVB phototherapy.
Methods
All prospective or retrospective studies were identified in MEDLINE from 1966 to June 2002. Bibliographies were searched to identify any additional studies examining this issue. All studies that attempted to quantify or qualify any additional skin cancer risk from UVB phototherapy were included. Study selection was performed by two independent reviewers. Results Eleven studies (10 of which concerned psoriasis patients), involving approximately 3400 participants, were included. Of note, three of the studies involved the same cohort: members of the 16-center US Psoralen plus UVA (PUVA) Follow-up Study. Other than the most recent Finnish study, all studies eventually showed no increased skin cancer risk with UVB phototherapy.One of the PUVA cohort studies examined genital skin cancers, and found an increased rate of genital tumors associated with UVB phototherapy, although this study has not been duplicated.
Conclusion
The evidence suggests that UVB phototherapy remains a very safe treatment modality
Read entire paper <Click Here>
Pseudocatalase cream was identified and created by Dr. Karin U Schallreuter in Germany. There are many success stories (published by Dr. Schallreuter) of individuals who have traveled to Greifswald Germany and have been treated by Dr. Schallreuter in her clinic.
Here in the USA, a team at Northwestern University (Chicago) reverse engineered drug created by Dr. Schallreuter and it is now available here in the USA from some compounding pharmacies. There is one on line at www.pseudocatalase.com and you may find others in your city or town.
What's in this article!This study proves that NBUVB therapy is an effective and safe tool in the management of vitiligo, with good stability of repigmentation and cosmetic appearance.
TITLE: Evaluation of narrow-band UVB phototherapy in 150 patients with vitiligo
AUTHORS: Y Hari Kishan Kumar1, G Raghu Rama Rao1, K.V.T Gopal, G Shanti, K Veerabhadra Rao
Background: Very few studies have been performed to evaluate the efficacy and safety of narrow-band ultraviolet B (NBUVB) therapy in Indian patients with vitiligo and are of small sample size.
Aims: The purpose of this study is to know the efficacy and safety of NBUVB in 150 vitiligo patients of various age groups. Continue reading
The three diseases that we see UVB NB prescribed for most often are Eczema, Psoriasis and Vitiligo. People being treated with UVB NB for Eczema and Psoriasis typically see results very quickly while those with Vitiligo have a tougher row to hoe.
With Vitiligo, we typically see re-pigmentation begin after forty to sixty treatments, remember with treatments usually ocurring three times a week we’re looking at 12 to 20 weeks before re-pigmentation begins.
With Vitiligo it usually begins with freckling Continue reading
The Author is the owner of Amjo Corp. Amjo's focus is the sale of PhotoTherapy Products for the treatment of Vitiligo and many other skin challenges.
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Chris Cane on First Vitiligo World Congress – September 2010
Marwa Fawzy on First Vitiligo World Congress – September 2010
mbenkum charles ayena on First Vitiligo World Congress – September 2010
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