Photo Courtesy of VITSAF
Nigeria

Activist Ogo Maduewesi has created online support groups for people with vitiligo, a skin disorder that causes blotches of pale skin, and has launched an online petition urging the UN to designate a World Vitiligo Day.

LAGOS, NIGERIA – Nearly 10 years ago, Ogo Maduewesi, now 39, noticed a white patch on her inner lip. Maybe, she thought, it was a bruise from the hard bristles of her toothbrush. Or perhaps it was evidence of a food allergy. In case she was reacting to something, she changed her diet and stopped using all skin creams.

But before long, similar white patches began to appear on her face. Then they spread to her neck. Soon, the discoloration overtook the right side of her body. That’s when people started to notice – and she began to worry.

“They would stop and ask, ‘What is this thing on your face?’” Maduewesi recalls.

After a private hospital misdiagnosed her condition as a fungal infection, she went to the skin clinic at Lagos University Teaching Hospital, a government-owned hospital.

A dermatologist there identified the condition as vitiligo, a disease in which skin pigment is lost in blotches as cells that produce melanin die off. Patches of skin may initially appear pale but eventually turn completely white.

Maduewesi was given Kenalog, a corticosteroid used to treat inflammation caused by conditions such as eczema and psoriasis. But the drug caused side effects, including stiff joints and lethargy, she says.

She was prescribed the same drug on her second visit. She soon got the impression that Kenalog – the chemical name is triamcinolone acetonide – was the only drug available in Nigeria to treat her condition.

So that was the last time Maduewesi went to the hospital. She researched her condition on the Internet, and then met others with the condition who were also looking for help.

“I was looking for people to encourage me, but they wanted to be encouraged,” she says. “I was looking for help myself, and I found others who needed help.”

Soon, Maduewesi and her new associates started holding support group sessions. A few years later, the Vitiligo Support and Awareness Foundation, or VITSAF, was born.

Since then, Maduewesi has been spreading awareness of the disease through her foundation, while also learning to live with it herself. She uses everything from fashion to social media to build up the confidence of people living with vitiligo and bring them together.

She has initiated an online petition to have the United Nations establish a World Vitiligo Day.

Vitiligo affects 1 percent of any racial group, according to the World Health Organization. The disease can dramatically alter the appearance of darker-skinned people because of the sharp difference between the discolored patches and their natural skin tone.

In Nigeria, at least 844,000 people – one-half of 1 percent of the population – have the condition, according to the Vitiligo Research Foundation, a nonprofit organization based in the United States. Nigeria has the highest number of people with vitiligo in Africa.

Vitiligo is thought to be an autoimmune disorder; many people with vitiligo have other autoimmune disorders, such as diabetes and Addison’s disease. There is also evidence that people with vitiligo inherit a genetic predisposition to depigmentation.

The disease has no cure. It is commonly treated with creams, such as corticosteroids, that control inflammation and can help repigment discolored skin.

Maduewesi does not wear makeup to conceal the white patches around her right eye and the right side of her forehead. She says she owns her vitiligo.

“I call it my white tattoo,” she says. “I can handle the situation now, but others may cry for weeks.”

Maduewesi officially registered VITSAF as a nonprofit organization in 2009. The foundation conducts walks and awareness campaigns to educate people about vitiligo.   

Today, the organization has more than a thousand members in Nigeria, she says.

The organization’s online community is even bigger, Maduewesi says. Its Facebook group, Vitiligo in Africa, has over 2,000 members.

Three years ago, the foundation began an online petition urging the United Nations to designate June 25 as World Vitiligo Day.

June 25 is the date pop star Michael Jackson, who had the condition, died.

The petition drive has obtained more than 486,000 signatures – just 14,000 signatures shy of the goal.

In 2012, Maduewesi was named an Ashoka Fellow. Ashoka, a global network of social entrepreneurs, awarded her the fellowship in recognition of her work raising awareness of the disease through social service, social media and entrepreneurship.

Her entrepreneurial venture, Vogo Designs, is a fashion house that sells unique fashions to raise funds for Maduewesi’s foundation.

She also was recently chosen as one of the 2014 Emerging Leaders by TechWomen, a skill-building initiative of the U.S. Department of State’s Bureau of Educational and Cultural Affairs.

“I am very interested in learning and understanding how best to communicate my work, create awareness and enlightenment, online sales and marketing using digital media,” she says.

Last summer, via Vogo Designs, Maduewesi organized a fashion exhibition featuring models with vitiligo.

Maduewesi has formed social media groups to help people with vitiligo cope with the condition. 

“Ogo has really tried for us,” says Esther Alloy, a Lagos resident who has had vitiligo since 2010.  “It makes you know that you are not alone in this fight. It is a wonderful group. They are like family even though we don’t know ourselves like that.”

But despite the support she feels from the group, the disease has diminished her self-esteem, Alloy says.

“I cannot wear short things again,” she says. “I know what fits me. I like wearing miniskirts. Now, I only wear trousers to jog because of the white patches on my legs.”

Vitiligo has a substantial impact on patients’ psychological health, says Dr. Ayesha Akinkugbe, a dermatologist at the skin clinic of Lagos University Teaching Hospital.

However, the clinic is understaffed, Akinkugbe says. Its two dermatologists attend to about 40 patients a day, and so they cannot offer more services to vitiligo patients.

“For me, what would be great would be to have a psychologist with us during our clinics,” Akinkugbe says. “We try to do the little we can, but it is not so much. That also takes time. We are not trained psychologists either, but by virtue of our training, we can help.”

Others throughout Nigeria have noted the impact of Maduewesi’s work.

Oyebisi Babatunde Oluseyi, executive director of Nigeria Network of NGOs, says Maduewesi educates people every chance she gets.

“VITSAF has no doubt brought to the front burner issues of vitiligo which before I met Ogo I’d not heard about,” he says. “Yes, I have seen a couple of people with patches on their skin. I never saw it as an issue until I started following VITSAF’s activities.”

Maduewesi says treating vitiligo requires dedication to one’s whole health.

She now eats a lot of raw vegetables and fruits. She takes folic acid and vitamin B12 supplements. She ingests antioxidants, including produce and supplements, to help pigmentation cells recover. She is diligent about applying sunscreen to her white patches.

Maduewesi also keeps her stress level low; over the years, she has noticed she gets more white patches when she is stressed.

Maduewesi aims to continue raising awareness of vitiligo.

“Now I use everything to build the confidence of people living with vitiligo,” she says. “For each project, people come out more, their self-esteem gets better. It also shows that we are beautiful, and we can be anything that we want to be.”

 

 

Editor's Note: Cristi Hegranes, founder and executive of Global Press Institute, also is an Ashoka Fellow. She is not acquainted with Maduewesi.