DON'T JUDGE THOSE OF US WITH SPLOTCHES AND UNEVEN SKIN COLOR!
Growing up, the Sun was my inspiration, my best friend. On weekends, when the Sun was shining, I enjoyed riding my bike to look at pretty houses and pretty yards. But the best time to enjoy the Sun was summer when every day, dressed in a swimsuit, I went swimming-- soaking--in the Sun.
I was sixteen the summer I noticed the dime-sized white spot on the side of my foot. It didn’t hurt, the skin around it wasn’t sensitive or discolored, and the white spot wasn’t tender--- it simply lacked color. Because I served as a part-time life guard every summer, my body carried a dark tan ---except for my foot's little white spot.
When I asked the family doctor about the spot, he told me it was just a small area of skin that had lost its ability to tan like the rest of my body. He told me not to worry. I recall him saying: “Just be glad it’s on the side of your foot and not on your face.”
Fast Forward--- ten years. By this time I was married. One evening, preparing for bed, I noticed my right elbow in the mirror. I was looking at a fifty-cent-size white spot and—on closer examination—realized it was a "close relative" to the white spot on my right foot. And that, my friends, was the beginning of my long journey with Vitiligo.
The Medical Definition for Vitiligo is: “A condition in which the skin turns white due to the loss of pigment from the melanocytes, cells that produce the pigment melanin that gives the skin color. In vitiligo, the melanocytes are destroyed, leaving depigmented patches of skin. Vitiligo is also known as piebald skin or acquired Leukoderma”. Years ago, few people talked about people's skin problems. Even Dermatologists knew little about the rare condition known as Vitiligo.
Determined to find answers, I made appointments with Dermatologists in nearby towns including Little Rock, Memphis, even Dallas. I learned more about Vitiligo with every visit and tried the suggested treatments but, overtime, living with Vitiligo became my best teacher. Based on what I've experienced, I could write volumes about this incurable skin condition. Most powerful is understanding how Vitiligo can devastate our vanity, our confidence, and our efforts to look professional and “socially” acceptable.
I’ve lived my life, made my living, in the “public eye”. I was and am still considered A Public Figure.
For years I served as a Television Host on live TV; I performed as a Professional Singer; I modeled for Journalists, Photographers, and Clothing Designers. As a Professional Public Speaker and non-profit Fund Raiser, I spoke to large groups. And, as a Runner, I spent all my “spare time” challenging my body, every day. So---ALL OF ME was on display---ALL THE TIME.
One Dermatologist in Little Rock prescribed a drug for my vitiligo that I took one hour before sunlight exposure. After taking the drug for three weeks, I suddenly experienced episodes of blindness that lasted several hours. I eliminated that drug immediately.
Soon after that scary experience, I visited with another Little Rock Skin Specialist who insisted I buy a line of cosmetics that would blend with my own skin color and “hide” my Vitiligo. After purchasing more than 150 dollars worth of these cosmetics, I quickly learned that covering my elbows and arms with cosmetics was a huge and costly mistake. My cosmetic-covered elbows stained my clothes and the furniture around me--- creating a nasty, expensive mess.
Finally, in the seventies, a well-known Dermatologist in Memphis, Tennessee, introduced me to a product called NEO-DYO-DERM, a walnut stain that I applied to my white spots using a Q Tip. The liquid successfully-stained my white spots, blended with my skin, and didn't rub off. Over a number of weeks, the stain gradually faded until I applied another layer of the product. It worked like a miracle. The stain was inexpensive, easy to use and my prescription was re-fillable at any Drug Store. I relaxed, knowing I was able to cover my white spots.
But…like life itself…nothing lasts forever. In 1987, shortly after moving to Houston, Texas, I received word the producers of NEO-DYO-DERM were closing their doors. I panicked, called the Company, and learned the product would no longer be available through their laboratories or any of their distributors.
I continued to run but I added sunscreen to my running requirements. Before leaving for my Great Wall Adventure, I received many gift boxes from various companies, including manufacturers of sunscreen lotions, gels, and oils.
It’s been decades since I "lived in the Sun". Please remember: The Sun didn’t cause my Vitiligo....it only exposed it. Over the years, I've learned that Vitiligo can be a serious condition that goes far-beyond the skin's surface.
Today, I’m careful to wear dark glasses every day. I've learned that Vitiligo can attack a person’s eye color and also claims one or both eyes' vision. Vitiligo not only complicates our looks but can play-havoc with our body's “inner-workings”.
Three years ago I developed a small cyst between my legs, in a very-personal area that Vitiligo “claimed” long ago. As the cyst changed it's shape and color, I received medical treatments, biopsies, and an alarming prediction for my body's future. Now, I’m facing surgery.
I retired from serious running in my late sixties but every day, I'm outside---fast walking and hiking trails, closed highways, and forgotten paths. Regardless of what I do, Vitiligo continues its quest to consume my body.
After Menopause, my Vitiligo gained momentum. These days I no-longer create the illusion of perfect skin. But, Age has its benefits. My “true” color has now faded away and---by avoiding most direct Sunlight ---my white splotches are barely-noticeable.
Living abroad, I saw Vitiligo's shocking effects on those with dark skin...most notably....people from India, China, and Africa. Vitiligo attracts attention when seen on every skin color but it's more "pronounced" on darker skin. Vitiligo “screams” of imperfection, of looking freakish and different; Vitiligo--fullblown-- robs people of their prettiness, cuteness, and handsomeness. Vitiligo begs to be bullied, especially when it appears on the young---the sensitive---the unknowing--- and the youthfully-unprepared.
Looking back, I was blessed to first discover Vitiligo on my foot-- a convenient, hide-away place. I was also fortunate to experience it when I was more “grown up”----when I could research Vitiligo and find ways to cope with it.
IN ALL MY LIFE, I’ve never had “usual or expected” kinds of conditions, illnesses, or imperfections. My permanent conditions are always rare, difficult to pronounce, incurable, and never---glamorous.
A Reminder: In my forties, I learned I have the rarest of all rare diseases. Research shows I am one of only five people (all females) in the entire world with no fingerprints. The disease is known as ADERMATOGLPHIA. I was born with it and--there is no cure.