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Tuesday, September 4, 2012

Recent News on Vitiligo - Scenesse, Tyrosine, Gold?

VitiligoWeb.com

I haven't been posting much lately on my Vitiligo blog, but I have been doing some reading and checking out the latest news on Vitiligo.

My recent post on Sunday, Sept 2 has a couple of videos worth watching.  The first is an update on drug trials for Scenesse.  It's an interview with the CEO from Clinuvel, discussing early results from the trials started in 2011.  There are some promising photos of patients with high repigmentation, and he says if things go well the drug could be available in 2 to 3 years.  I also posted a second video which has a good presentation of what is happening under the skin with vitiligo, with some good visual video.  If Scenesse is eventually approved for use, Clinuvel company stock could also be a good buy!

Another recent news item caught my eye.  A person did a recent post on their experience with vitiligo, and how a supplement called Tyrosine gave them repigmentation.
http://www.experienceproject.com/stories/Have-Vitiligo/2527288
I can't verify that this story is true, it's just a post on the internet, but I did some reading on Tyrosine and it does play a role in pigmentation.  If your body doesn't produce enough Tyrosine, maybe that plays a role in vitiligo.  Also, I checked the Merry Clinic website which has a vitamin mix for vitiligo, and sure enough Tyrosine is one of the supplements in the mix.  This is the first I've heard of this connection.  I decided to try it out and bought some Tyrosine capsules at my local vitamin store for about $25.  If I get any good results I'll post them here.  If you decide to do this yourself, read up on Tyrosine first like I did, to see if it's safe for you.  It seems to be relatively safe unless you have thyroid issues, there is a good write up on it on Wikipedia.

I've also read before that ginkgo biloba can help with vitiligo, so I also bought a bottle of that to try, but I have higher hopes for the Tyrosine.

There was also some news out lately that says people with vitiligo have higher risk of thyroid disease, but to my knowledge I've never had thyroid issues.  You can read it here.
http://www.northdrugstore.com/news/2012/08/vitiligo-patients-at-high-risk-of-developing-thyroid-disease/

One other thing I've noticed, is that I now have vitiligo on most of my hands above my wrist, except there is a patch of my normal skin color under my gold wedding ring.  All my other fingers have white color in that spot, except where my wedding ring is.  Is it just a coincidence, or could the gold have some sort of effect?  I've heard that copper deficiency could be associated with vitiligo, but maybe also gold?  If anyone else has seen this effect please post below!

I'd also appreciate any other comments on your experience with Vitiligo.

Sunday, September 2, 2012

Vitiligo Trials of Scenesse - Youtube Video

VitiligoWeb.com

There is a new drug called Scenesse that started trials in 2011 for vitiligo.  I found this video on Youtube where they interview a doctor from the drug company, and there are some dramatic photos of early results on vitiligo patients.  Looks very promising!



Here is an older video with some good information on what they think is happening inside the skin with Vitiligo.






Saturday, May 26, 2012

Clinuvel starts final trial of Scenesse

VitiligoWeb.com

I have written about Clinuvel and Scenesse before, but now they have reported the start of a final phase III test of the drug in the US.  This drug is targetted to people with EPP, a light intolerance disorder, but also may have applications for Vitiligo.

The trial will last six months and we will be watching for the results.  There are very few drugs in trial for Vitiligo right now.

To read the news, click below:
http://www.lifescientist.com.au/article/425416/clinuvel_starts_final_trial_scenesse_epp/

Awareness Event for Vitiligo

VitiligoWeb.com

A mass painting event took place in Puducherry, India to bring awareness to Vitiligo.  The article below gives details of the event and some stats on people affected by Vitiligo in India.

I think the event was a great idea!

To read about the event, click below
http://ibnlive.in.com/news/awareness-event-for-vitiligo/259808-60-118.html

Tuesday, April 17, 2012

Phase 3 Study of Scenesse Coming

VitiligoWeb.com


I have reported on Clinuvel and their experimental drug Scenesse in the past.  It looks like they are getting the go ahead in the US to enter a phase 3 study.


Scenesse is a photoreceptive drug.  From the article, "Scenesse is a subdermal injectable designed to mimic the body's natural ability to create skin treatment melanin.  It is being developed to treat EPP as well as vitiligo.  Its INN designation is afamelanotide."


Melanin is what is lacking in skin with vitiligo when it loses color.  There aren't many drugs in the pipeline for vitiligo, so hopefully the study will have positive results!


The company now expects to commence the trial in May. The randomised, double blind, placebo-controlled study will involve some 75 patients in up to seven centres. Patients will receive three Scenesse or placebo implants over a the six-month trial period.


To view the entire article, click below:


http://www.lifescientist.com.au/article/420686/clinuvel_set_accelerate_phase_iii_study_scenesse/

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Sunday, April 8, 2012

Student Reporter Needs Help for Vitiligo Story

VitiligoWeb.com


Here is a request for help from a student reporter doing a story on Vitiligo.  If you can help, feel free to contact her.  I was made aware of this request through VitiligoFriends.org
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My name is Naomi Ogaldez. I am a Staff Reporter at El Nuevo Sol, which is an online bilingual newspaper at California State University, Northridge. I am writing a research article and a news package on vitiligo in the Latino community. My inspiration for wanting to write this piece was one of my mom's friends named Ilda who has vitiligo. 

I met her shortly after my dad had abandoned my household when I was 6 years old. I remember she was one of the few people in my church that would comfort me in that devastating time growing up. When people found out about my dad, they would reject me and say many hurtful remarks that I will never forget. 

What really made me admire her was her love. Despite being humbled and despised by most of the people in the church because of her vitiligo, she still would serve the community and help those in need like me. It would get me mad watching how people would treat the both of us, but especially her. I dealt with the negativity that everyone would say to me because I didn't have a dad, but I couldn't stand to see how they treated her. I would always try my best to defend my beloved friend. I felt that I wasn't doing enough to help her. I knew I wanted to do something about it when I grew older.

Now I feel that I have the capability of making a bigger impact than before. So I decided I wanted to write about vitiligo. Since I am writing it for El Nuevo Sol, I have to make the focus be towards the Latino community because that’s our audience. 

With this article, I wanted to bring awareness about vitiligo, correct a ton of misconceptions about it, get different perspectives of people who have it, and impact my community in a positive way. 

What I need help with:

-I need to interview a Latino that has vitiligo that would love to share their story with me on camera for my news package.
-I have to interview a Dermatologist or a Researcher that would like to tell me about the theories they believe that causes vitiligo and how they have seen it affect the Latino community.
-I have to interview a health insurance company representative because I also want to talk about how insurance companies deal with vitiligo patience. What are the limits for coverage and if they accept any type of vitiligo.

If you may know of someone that would let me interview them or you yourself would love to, please let me know!

I live in Northridge, California so if anyone lives around this area and would love to get interviewed on camera please email me at  kooleo1516@yahoo.com or comment on this forum.

If worst comes to worst, I can do a skype interview, but I would prefer to film in person.

Also, if their is any information that you believe I should include or proper terms about vitiligo, please let me know. 

Thanks for all the help!

Vitiligo Candidate sought for National TV Show


VitiligoWeb.com
National TV show seeks a person with Vitiligo in the New York area.

Read below to see if you fit the bill, or know someone who does:
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From Mary McAlister Cleveland at the National Vitiligo Foundation:
A NYC-based agency is seeking a Vitiligo candidate for a national television show.
The segment will focus on educating and raising awareness of Vitiligo.
The segment will air for National Vitiligo Month.

The person must meet the following criteria:
· Lives in Manhattan, or surrounding boroughs in NY
· Is 18 years or older
· Has a severe case of vitiligo
· Interested in laser treatment to effectively manage and treat vitiligo
· Non-insured, non or limited medical coverage
· Financially strapped and in need of help; living in dire situation
· Willing to share personal testimony on-air/on-camera
Please send a recent photo that vividly shows your condition. You will be contacted for a brief pre-interview and if chosen, will be required to commit 2-3 hours (maximum) for the show's taping, etc.

If interested in participating, please respond quickly.  Send a letter stating how you meet the criteria listed above. Also include a photo. *All photo submissions become the property of NVFI and may be used for marketing purposes.

Entries can be sent to: 

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Monday, March 12, 2012

Psoria-Light Therapy for Skin Conditions

VitiligoWeb.com

New light therapy available to people living in the Tampa area.  This treatment is being done at the Forman Dermatology and Skin Cancer Institute.

I've often read about light therapy treatments being used for Vitiligo, and sometimes with great success.  Most often these treatments are done at individual clinics, so if you don't live near one it's hard to get the therapy.  Hopefully these kinds of treatments will become more available and more effective.  The good thing is that light therapy can be used for a variety of skin conditions, so it may become more economical for more clinics to offer this if many people can use it.

Psoria-Light™ is a UV LED medical device used for treating psoriasis, eczema, vitiligo and other UV-treatable skin disorders. The Deep UV LED technology, which was originally developed for NASA and the U.S. military, delivers both NB-UVB and UVA light to affected areas, creating a less toxic and noninvasive treatment option.

Click below to learn more:

http://www.prnewschannel.com/2012/03/06/tampa-dermatologist-new-light-therapy-for-skin-conditions-featured-on-news-broadcast/

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Sunday, March 11, 2012

Herb Treatments for Vitiligo?

VitiligoWeb.com

Here is a post I found with a short description of two herbs for potential treatment of Vitiligo.

I'm starting to think that it can't hurt to try different things for vitiligo, especially if it's certain vitamins or herbs that people use for general everyday health reasons anyway.  It ofcourse is good to consult a doctor, but I think most general doctors don't have vitiligo too high on their importance list.

I am still taking folic acid and vitamin B6 B12 each day but won't know until summer if it's done anything.  I lose my tan in the winter and my vitiligo isn't as noticeable.  When it gets sunny again and my skin goes darker I'll be able to see if there've been any results.  I've also been thinking of trying a special vitamin blend for Vitiligo from the Merry Clinic.  It costs about $30 and lasts for about 2 months.

The two herbs discussed below are ginkgo biloba and picrorhiza.  A drug called methoxsalen is also mentioned.  Though nothing conclusive is found, the article is still worth a read.

http://www.dailyglow.com/how-to-treat-vitiligo-with-herbs.html

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Friday, February 17, 2012

Market for Vitiligo Therapeutics set to Grow

VitiligoWeb.com

There are a lot of people in the world spending a lot of money on Vitiligo treatment.

Data I saw today estimates the Vitiligo market will be worth $2.7 Billion annually by 2019.  Sometimes it seems like Vitiligo only affects a small percentage of the total population, and that is true.  But with 6 billion people in the world, and another 1 billion on the way in the next 10 years, that's 60 to 120 million people in the world who would like to treat their Vitiligo (if you consider that 1% to 2% of the population has V).

Maybe of more concern, the Vitiligo market will see only one new drug approved during this time.  It would be nice if there was more on the way, hopefully Scenesse will be a successful treatment for Vitiligo.

GlobalData estimated the global vitiligo therapeutics market to be worth $1.4 billion in 2011. It is expected to grow to $2.7 billion by 2019 at a Compound Annual Growth Rate (CAGR) of 8.8%. This growth can be primarily attributed to the rise in the number of patients undergoing treatment for vitiligo and the launch of Scenesse (afamelanotide) in 2014.

Click here to read the full article

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Tuesday, January 31, 2012

Vitiligo Cover - Interesting Product

VitiligoWeb.com

This isn't a cure for Vitiligo, but it looks like an interesting product to help cover it up, or make it less apparent.

It's called Vitiligo Cover.

If you are looking for something to cover your Vitiligo, you want something that isn't too expensive, looks good, is easy to order, and lasts as long as possible.  This product looks like it does all that.  It costs about $30, can be ordered online, and lasts about a week when applied.  The photos on the website look encouraging.  I don't know if it works for darker skin colors, the photos I saw were for 'white' skin.  I'm not really in need of a cover up right now because it's winter, I've lost my summer tan, and my vitiligo isn't too apparent.  But come this summer I will likely order some and try it out.  I also plan to contact the people who run the website and ask some questions.

Check the link below for more info:

http://vitiligocover.com/vitiligo-dealing-with-the-changes/

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Vitiligo Vitamins from Merry Clinic

VitiligoWeb.com

I just read a press release from the Merry Clinic about Vitilax, a new blend of Chinese herbs that supposedly help with Vitiligo.  I don't know whether it works or not, but it's an expensive treatment!  If they want to give me some free bottles I'll try it and report the results on this blog.  That goes for any Vitiligo product out there, if you believe it works then contact me and I'll try it, and report the results here!

About the Vitilax...

You get a 150 capsule bottle for $39.99.  The recommended dose is 12 capsules per day, so the bottle will be gone in about 11 days.  In a one month period you'd need about three bottles, which would cost just under $120 per month.  I don't know if many people could afford that treatment!

Dr Merry Li has treated many vitiligo and skin pigmentation disorder patients over the years and has seen real results in skin condition and appearance. “My unique herbal formula, Vitilax, begins the healing process from the inside by balancing the immune system,” explains Dr Li. “These capsules contain a blend of 14 traditional Chinese herbs and ingredients targeted to the treatment of vitiligo. Now, the Viti-Nutrients vitamin supplement – which is high in compounds such as zinc, copper, pantothenic acid, vitamin B12 and folic acid, often found lacking in vitiligo sufferers – provides an anti-oxidant boost when taken together with the Vitilax capsules and helps to speed up and enhance the reformation of pigment in white skin patches.”

Read more: 

http://www.digitaljournal.com/pr/563412

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Vitamin D the Sunshine Vitamin

VitiligoWeb.com

Here is an article that suggests Vitamin D can help with vitiligo, among other skin conditions.  They don't give much back up or research, but Vitamin D seems to have other benefits especially in winter climates that get less sun.  The body can create it's own Vitamin D when it gets sunshine, but not if it's always cloudy.  I have been taking folic acid with Vitamin B's, and may add Vitamin D to the mix.

http://www.prohealth.com/library/showarticle.cfm?libid=16768

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Thursday, January 26, 2012

Climb for Vitiligo

VitiligoWeb.com

Here is a great story I came across about a young women climbing and raising money for Vitiligo.  Leanna's mother has Vitiligo, and Leanna has been climbing the tallest mountains on various continents with her dad.  All this and she is only 18 years old!  I highly recommend following the links below to the full story, and to her personal website.

Leanna Shuttleworth became the youngest British female to summit the highest mountains in three continents- North America, South America and the Antarctica.

Whilst raising money for the Vitiligo Society she aims to become the youngest British female to finish the Seven Summit challenge, and the youngest British female to reach the top of Everest.

Click here to read about the Climb for Vitiligo

and visit her personal site at www.LeannaShuttleworth.com

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Thursday, January 19, 2012

Excimer laser therapy for Vitiligo?

VitiligoWeb.com

Just came across an interesting post about excimer laser therapy for Vitiligo at the Arlington Center for Dermatology.  It looks like the center provides this treatment which is one more option to try and treat vitiligo.  It is also used to treat Psoriasis.

Most patients require 6 to 25 treatments to improve psoriasis and 25 or more treatments to improve vitiligo.  Certain areas such as the face clear more quickly than the body or scalp while other areas such as the hands and feet may require more sessions.  Treatments may be performed as frequently as 2 to 3 treatments each week.  Not all patients will clear completely. This is not a cure. The goal is clearing of the affected areas with subsequent remission.

To read more, click below:
http://acderm.com/ACD-WP/excimer-laser-therapy-psoriasis/

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Sunday, January 8, 2012

Can White People Get Vitiligo?

VitiligoWeb.com

Can White People Get Vitiligo?

This is a question I ran across recently on the web.  Someone posted the question on Yahoo Answers.  Ofcourse the answer to the question is Yes, but it's interesting that some people don't know this.  I guess people are learning about Vitiligo all the time.

I am of European decent with 'white' skin, and I have vitiligo.  I tan really well in the summer, so my vitiligo shows up against my tanned skin then.  I've started wearing a lot of sunscreen on my vitiligo patches in summer because you still can burn the skin.  In winter, my skin gets fairer and the vitiligo is harder to see.  I think it is definitely easier with someone to live with vitiligo if you have fair skin, as opposed to dark skin.  Especially when you get patches on your face and hands.

I've started taking folic acid with B6 and B12 vitamins again to see if it stops or slows down my vitiligo.

Here is the link to the question and answers page on Yahoo Answers.

Wednesday, January 4, 2012

Vitiligo Ultraviolet Light Therapy

VitiligoWeb.com

Here is another interesting Vitiligo resource I came upon, the website of Dr. Emil Tanghetti.

The page gives a description of what Vitiligo is, a discussion on causes (which are basically unknown), and some treatment discussion mainly involving creams and ultraviolet light therapy.

It appears the doctor works at a center where they have a light machine for vitiligo treatments.

To visit his webpage, click below:
http://dermatologyandlasersurgery.com/medical-dermatology/vitiligo-depigmenation/

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Vitiligo mentioned in Ask the Doctor

VitiligoWeb.com


I just ran across a help column called 'Ask the Doctor' that had a question from someone regarding Vitiligo.  The person was asking the doctor what they could do about it.

The doctor gave a few interesting ideas, which included:

- Cortisone in different creams and ultraviolet light
- Cosmetic agents to cover up the vitiligo patches (the doctor gives a few examples and contact info)

The doctor also listed the contact info for the National Vitiligo Foundation.  The website is www.nvfi.org, and the phone number (not toll-free) is 513-541-3903.

To read the article, click below:
http://www.yumasun.com/articles/vitiligo-75357-embarrassing-wear.html

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