Mysterious Disease, Vitiligo, Causes Emotional ”Not Physical” Pain for Sufferers:
Published October 2007
When kids notice Maggie Hargrow, she knows by the shocked looks on their faces they are curious about her ”maybe even a bit scared. The braver kids always blurt out the same questions:
Does that hurt?
Did you get burned in a fire?
Thats because Hargrow, 66, of Avondale, has vitiligo, a relatively common condition that causes the skin to lose its pigmentation. Although scientists believe the condition is genetic, there is no cure for vitiligo. It most often occurs in people with autoimmune diseases and first appears near the mouth, eyes, nose and joints.
Hargrows vitiligo started in 1975 with a single white spot at the corner of her right eye. Over the next 25 years, the condition has slowly crawled across her face and other parts of her body”including her scalp, hands, feet, arms and legs.
Im thankful that I can legitimately answer no to the kids questions, but this disease has caused me emotional pain. People have been very cruel to me over the years, Hargrow says. I cant go in the grocery store or even walk down the street without people staring at me or assuming I have some horrible, contagious disease. They sometimes shrink with disgust.
No matter how resilient a person tries to be, she says, eventually those looks and comments hurt.
For years, Hargrow says she has been embarrassed by her condition and hesitated to go out in public.
She didnt share her feelings with her family” even though they continued to show her love and support. She became somewhat reclusive, her overall health declining as a result.
UC dermatological researcher Raymond Boissy, PhD, is working with the National Vitiligo Foundation to break down barriers for people with vitiligo as well as understand the genetic causes for the disease.
Boissy is organizing a national conference to be held in Cincinnati Saturday, Oct. 27 to help educate both patients and researchers about vitiligo.
Vitiligo is one of the most prominent non-cancer skin diseases, but the lack of general community awareness about it has resulted in painful stereotypes that make leading a normal life very difficult, explains Boissy, professor of dermatology at UC and president and chairman of the National Vitiligo Foundation.
Only 30 percent of patients will show any progress from the therapies available today, he adds. The foundation exists to help raise awareness of the disease, provide funding for new research and advocate for the rights of people like Maggie.
Hargrow says last years vitiligo conference changed her life.
Before I went to the conference, I felt isolated and cut off from the rest of the world, she recalls. But when I walked in and saw people just like me, it was like that covering of fear and self-loathing had been scraped off.
It gave me the confidence to come out of hiding, and reminded me that each day is one more beautiful day that God has given me to do something with my life. I try to think positively now and do more to conquer my fears.
Hargrow says in addition to registering people for this years conference, she’ll be giving every attendee she sees a big smile and hug.
Unlike vitiligo, smiles and positive feelings are contagious. I cant wait to spread them to other people like me, she laughs.
Hargrow and other vitiligo patients from across the United States will share their stories during the patient-support group session at the conference.
Pre-conference attendees can take a tour of Boissy UC vitiligo research lab at 10 a.m. Group sessions, including separate tracks
for patients and scientists, begin at 1 p.m.
Patients and their families will hear about ways of maximizing dermatology visits and strategies for living better with vitiligo, as well as about current and emerging light and drug therapies for the condition.
Following the group session, Lee Thomas, a Michigan TV anchor who has vitiligo, will give a keynote address during the National Vitiligo Foundations Awards Banquet about his personal experiences with turning white.
The foundation also will be awarding $30,000 in scientific grants.
Another Perspective:Â Kids and Vitiligo
Although about 40 percent of all people with vitiligo are over age 15 at diagnosis, some people literally will live their entire lives with the condition.
Miller Beyer, 9, of Mason, was just four years old when his mother noticed small white spots developing on his hands and knees.
We’ve always told Miller that his vitiligo is just one of the things that makes him special, but its tough for a kid to be different, says Bess Beyer, his mother. Fortunately, most of his spots are in places that aren’t that noticeable, which helps him deal with the condition.
Last year, Millers mom took him to the vitiligo conference so he could see other people like him.
He felt like he was the only person who had this problem, so the conference was a big confidence booster, she says.
Now in the fourth grade, Miller is pretty matter-of-fact about his condition.
People always ask: Why is your skin so white? Whats on your skin? I just tell them my skin doesn’t produce color, and its not contagious, he says. Most people are cool with it after that.
Next year, the National Vitiligo Foundation hopes to host Camp Discovery, a retreat for kids and friends of kids with vitiligo to help foster understanding about the disease.
Originally posted on Feb 19, 2012