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"Speaking of Vitiligo..."

IN HER WORDS: Valarie Molyneaux, president and founder of VITFriends

domingo, enero 22, 2017

Valarie Molyneaux VitfriendsThis blog will be the second in a series that I’m going to call IN THEIR WORDS. In these blogs I will interview people who care deeply about vitiligo and its community, including patients, their family members, doctors, researchers, philanthropists, pharmaceutical scientists, and others. The first in the series introduced you to Dr. Richard Spritz, who has done a significant amount of work to understand the genetics of vitiligo. Here we will highlight Valarie Molyneaux, a kindergarten teacher, vitiligo patient, and president/founder of the vitiligo patient support group called VITFriends.

Valarie has accomplished a tremendous amount in raising vitiligo awareness and bringing people together in a very short time. Valarie started the VITFriends vitiligo support group in 2004, and now has a large membership with regular meetings in Boston and yearly conferences that have been really well attended (the picture is from the meeting in 2015, she’s on the far left of the picture, next to me). The group has since expanded to multiple locations across the country, including NY, CT, NC/SC, IN, DE, MN, and DC. Probably her most impressive accomplishment was in leading the first World Vitiligo Day meeting in the US, which took place in Washington D.C. this past summer of 2016. It was an incredibly successful and inspiring meeting, and has launched an annual event that will take place in Detroit this summer, 2017.

Me: When did you first get vitiligo? What did it look like at that time, and how has it changed?

Valarie: I first noticed a white spot on my left thumb in 2001 and was officially diagnosed in 2002.

Me: Your husband Roy also has vitiligo is obviously a great partner for you. When did you meet?

Valarie: We met in 1980, married in 1990 and he was an amazing support during my roughest vitiligo days. Then in 2006, I noticed a white spot near his right eye; strangely, in the small location a spot was enlarging for me near my left eye.

Me: I know you’re very proud of your sons. What do they do?

Valarie: James our oldest is an English teacher and Michael our baby is a Physical Education teacher and sportscaster with CLNS Celtics sports radio.

Me: You occasionally talk about what it’s like to have young kids in your class with skin diseases. How do you relate to them? What do you tell them?

Valarie: The first day of school is usually scary for the children, but honestly, it is for me as well. Some refuses to come close, but within a month of showing them LOVE and sharing facts about my vitiligo, we eventually begin to share hugs most every day.

Me: Where did you get the idea to start Vitfriends, and how did you decide on the name?

Valarie: When I first asked my Dermatologist if they were others like me, was there a group, she said NO. I began to search facebook and there I found VSI of California. I met many folks online, but I wanted to be able to meet others, so I attended their conference in VA (2005) and spoke with Randy the founder about starting a group in the North East, but that was not possible. So, I thought that I could do something and spoke to some of the folks I met at the conference.

Me: Tell us about World Vitiligo Day last summer. What was it like putting it all together? Are you happy with how it turned out? Any surprises?

Valarie: WVD 2016 was beyond my wildest imagination. When I first dreamt of it, I felt may 50 or 70 people would really do this. Apart from the birth of my sons, this was an amazing life event, but with many sleepless nights and tears. I still cry tears of JOY when I think that we made this happen. UNITY was Key to the success of D.C. I know that I harassed many often, but I had to, if we were going to get the best results. The biggest surprise was of course the turnout which was phenomenal, this was well worth it and I’d do it again and again.

Me: Do you have plans to extend Vitfriends to more locations?

Valarie: Yes, we’ve had inquires from Puerto Rico, Barbados, Canada, and Colorado just to name a few places.

Me: What would you like to do in the next 10 years for vitiligo? What do you need to make that happen?

Valarie: I greatest desire is to make Vitiligo my number ONE priority. I would love to do this full time. I’d love to be able to visit Dermatologist offices, talk to patients as I represent VITFriends and offer support. However, this would require FUNDING for VITFriends or the opportunity to become a consultant for a medical institution or a Dermatology Clinic.

Me: You have done so much for people with vitiligo. Where do you get the energy and passion for this?

Valarie: I remember what it felt like to have NO one to turn too; NO one who understood my pain and suicide seemed like an option to end the pain. Today, I would do anything to see that NO one experiences this feeling of isolation and shame and is looked upon as being diseased, disfigured and disgusting. Vitiligo is my Passion and I know that my strength and energy comes only from God.

Me: Anything you’d like to say to our readers that we haven’t already touched on?

Valarie: Over 70 million people globally have Vitiligo, yet there are folks for whom Vitiligo is still is an unknown/mysterious condition. The lack of research funding into the cause and cure of Vitiligo is an ongoing issue; the lack of financial support for viable support organization that offers Hope is shameful and this I see is our greatest dilemma as the Global Vitiligo Community.

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