Vitiligo

JUNE is National Vitiligo Awareness Month in 9 states in the US–Colorado, Georgia, Louisiana, Maryland, Massachusetts, New Jersey, North Carolina, South Carolina and West Virginia. As a high profile personality and sufferer of this rare skin disorder for 16 years, I wanted to dispel a few myths and share some fast facts.

What is Vitiligo?  Vitiligo (vit-ill-EYE-go) is a disorder in which white patches of skin appear on different parts of the body. This happens because the cells that make pigment (color) in the skin are destroyed. These cells are called melanocytes (ma-LAN-o-sites). Vitiligo can also affect the mucous membranes (such as the tissue inside the mouth, nose and the eye). In the United States,1 to 2 million people have the disorder which affects ALL races and BOTH sexes EQUALLY.

It is very important to understand what Vitiligo is NOT: It is NOT a form of Leprosy. It is NOT a form of Cancer. It is NOT Terminal (fatal). It is NOT Contagious. It is NOT Harmful.

Michael Jackson was the first to bring attention to Vitiligo and suffered great emotional pains most of his life because of public disbelief. It was later discovered that many other celebrities suffer with Vitiligo. Entertainment Anchor Fox 2 News Lee Thomas is the most vocal today and has launched a personal campaign to combat the disorder. Mr. Thomas recently announced he believes he has discovered an extremely successful treatment. We are anxiously awaiting the results of his research.

I am personally excited about the coming season of America’s Next Top Model (Cycle 21), when the very brave and lovely Chantelle Brown-Young will represent women with Vitiligo before all America. Chantelle is as inspirational as she is beautiful and is sure to win the hearts of girls and women everywhere who are uncomfortable in their own skin.

Two African-American beauties with Vitiligo, Cheri Lindsay and MeShona Walker , share compelling stories on their respective YouTube Channels, and are also prominent models for Dermablend Cosmetics.

Due to the high visibility of Vitiligo and the public’s lack of understanding of this rare skin disorder, Vitiligo can cause great emotional and psychological pain and many sufferers become “socially reclusive.” Several Vitiligo Support Groups are available for those interested: Vitiligo Support International.org, Vitiligo Support International.org (local support), Vitiligo Friends.org, American Vitiligo Research Foundation, Vitiligo Support International, and the latest (Vitiligo Bond.org) .

As a Minister and Substitute Teacher with this skin disorder, I have encountered interesting situations, received humorous comments, and have occasionally  expressed personal feelings about Vitiligo here on my Blog. I pray my Posts have been helpful.

I have endured many losses in my lifetime–parents, grandparents (including the beloved grandmother who raised me), siblings, my husband, and most recently my beloved son. I have even lost jobs, finances, material possessions and more–making the loss of skin pigment insignificant in comparison. In the economy of Christian Stewardship “Loss” is “Gain” and following Christ requires self-denial and sacrifice.

Miraculously with every loss though painful, I have gained new strength (physically and spiritually). Whenever I look into the mirror, I see a woman who is “fearfully and wonderfully made,” and stronger for what she has been through. At the end of the day I can say, “It was good for me that I was afflicted” and I am not bitter–I am better.

God knows the way that I take and has placed me atop this very “public pinnacle” for a reason. Week after week, surrounded by stalwart Cancer sufferers and survivors, I am reminded whatever else Vitiligo IS—IT IS NOT TERMINAL. And by God’s Grace, am blessed ONCE MORE to gloriously proclaim, “I shall not die, but live, and declare the works of the LORD.”

Favor

“For thy Maker is thine husband; the Lord of hosts is his name. . . .” Isaiah 54:5 (KJV)

To favor means to show special regard or exceptional kindness to someone. It means to give preferential treatment in comparison to others and that the one “favored” receives generosity and goodwill far beyond what is normally expected. This is generally the favor that we receive from the Lord. One night, following an unusually challenging week, just before my evening prayers, to quote the old saints,”I looked at my hands and my hands looked new.” There it was–a startling sign of God’s Divine favor towards me!! On my third finger, left hand, was an unmistakable ring of color.  Amazed, I thoroughly explored it, questioned its meaning, and tried to understand why I never noticed it until that moment. Then these words of Scripture echoed in my spirit: “You have not chosen me, but I have chosen you, and ordained you . . . .” (John 15:16). Suddenly, I understood what it truly meant to be “known (by God) from my mother’s womb.” I always knew my life was not my own.  My heart raced and rejoiced to think that I would be so highly regarded with such a miraculous gift for all the world to see. Excitedly, I spent the rest of the night studying the meaning of the “wedding ring.” Needless to say, no wedding I ever officiated–not even my own wedding vows, prepared me to fully grasp the meaning of this miracle!! What a Blessing to be entrusted with such an incredible sign of personal covenant with God!!

As I continued to look at my indelible gift and to study the history of the ring and the “wedding ceremony,” I was even more amazed. The ring symbolizes love and love, according to I Corinthians 13, is the most worthy of all emotions. The wedding ring, in particular, is an instantly recognizable symbol of the joining of two in marriage. It is an endless unbroken circle of eternal love that continues its endless flow through time. It has no beginning and no end and returns to itself, like life. The roundness of the ring represents “eternity” symbolizing a union that is to last forever. The hole in the center is not just a space — it symbolizes the gateway or door that leads to things and events both known and unknown. Those in Antiquity, believed that a vein, or nerve, ran directly from the “ring finger” of the left hand to the heart, (the latin, vena amoris “the vein of love”). In the marriage ritual, the “engagement ring” is removed and replaced by the wedding band (symbolically meaning the wedding band is being placed closest to the heart). Finally, the wedding band signifies the last gift to the “other” sealing the union’s “undying” love.

I cannot truly say, I understand everything that has happened to me these past few years; I agree with Job, “it is simply too wonderful for me.” I admit, I never fully grasped “the why of” this skin disorder — this “thorn in my flesh,” until my ring of color reminded me that “God’s ways are not our ways” and God uses “simple things to confound the wise.” I feel honored and am sincerely grateful to think the Savior of the world would Bless lowly me in such a way! What reassurance of God’s constant presence and steadfast love. What a phenomenal way to show to the world that this broken, earthen vessel, is not only Blessed and Beloved, but Highly Favored!

Out of the Mouths of Babes

 

The wolf will live with the lamb, the leopard will lie down with the goat, the calf and the lion and the yearling together; and a little child will lead them.  Isaiah 11:6 (NIV)

I have an autoimmune skin disorder called Vitiligo that gradually robs the skin of its pigment, giving it a milky white appearance. My hands have lost most of their pigment and are the first things others notice.  I am a substitute teacher and the reactions of the children are varied and interesting.  Here are a few responses I would like to share:

Emily (Age 7)  Sitting on the lap of her dad, innocently asked me, “How can a person be both brown and white at the same time?”  I simply replied, “I don’t know sweetheart. That’s just the way it is.” That seemed to satisfy her curiosity as she smiled and went on to play with her toy.

Jocelyn (Grade 3)  “Miss Ebony, that color is going to look good on you when God gets finished painting you.”

Samantha (a cute little Caucasian girl in kindergarten) asked me what happened to my hands?  I replied, “An angel kissed me.”  And she said, “Yes, I know the angel kissed me all over.”

Jeffrey (Grade 2) Carefully explored my hands with his eyes and simply said, “Cool.”

Geordie (Grade 1) When I told him I was turning white.  His eyes widened, he gasped and frantically asked, “Does that mean I’m going to turn Black?”

Ericka (Age 10-Kid’s Plus) Had just received an award for her Dr. Martin Luther King Speech asked, “Miss Ebony, how are you going to feel when you turn all white?  Will you still be Black and celebrate Dr. King’s Birthday with us?”

A two-year old in grocery store ran over to me, touched my hand and asked, “Aw, does it hurt?”

Carson (4 year-old) was frantically waving his hand while I was teaching the class and when I called on him said, “Miss Ebony, Miss Ebony, did you know that your brown is coming off?”

Nine year-old with his mom during Literacy Class scanned me from head-to-toe and after giving more consideration to how I was dressed than to my hands, decidedly asked, “Are you the Principal?”

Ten year-old at the supermarket on a Sunday afternoon excitedly ran over to me, pulled my coat, and asked, “Are you somebody–you look like you are somebody!”

My favorite reaction was when my secretary brought her 2-year old granddaughter into the office to greet me one Sunday morning.  Her grandmother asked her (as the child stood intently staring at me in my clergy robe), “What are you going to say, sweetheart?”  And that sweet little innocent baby looked up at me and said, “Good morning, Jesus.”

God Bless the pure in heart–God Bless the children.