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Thriving with Vitiligo: An Interview with Karlowba Powell

By Madeline Glaeser

Karlowba is wearing our Women’s LumaLeo Pullover in Soft Lilac Heather

We outfitted Karlowba in our world-leading UPF 50+ for weekend errand runs and date nights so she can stay protected wherever her day takes her. See her wearing our LumaLeo Pullover, Motio Joggers, Anastasia Elegant Full Coverage Hat, Calvada Cover-Up Dress and a *sneak peek* 2024 hat – coming soon! Coolibar works diligently to provide the best UPF 50+ style to everyone under the sun, including those with skin + sun sensitivities like Vitiligo.

Women’s LumaLeo Pullover in Soft Lilac Heather and Maho Weekend Pants in Black

Who is Karlowba Powell?

Mother. Daughter. Attorney. Basketball star. Empowerment advocate.

Karlowba Powell has lived with Vitiligo for 37 years, but not once has it slowed her down or dulled her shine. Instead, she encourages people to embrace their authentic self—including our differences. Or, as she calls them, our superpowers.  

Because of her infectious passion to empower, she was recently approached by People.com to be featured in an article lending advice for teachers and parents of children with Vitiligo.

“People with Vitiligo are my people but I want to inspire everyone to embrace who you are.”

The Coolibar Marketing Team was lucky enough to meet with Karlowba to talk about her journey with Vitiligo over some sunshine and tacos.

Q&A

How do you define Vitiligo?

“Vitiligo is not a disease to me. It’s a skin disorder. What people don’t know is your skin’s pH is supposed to be H2O, pure water, but Vitiligo patients have too much H₂O₂, hydrogen peroxide, in their skin which bleaches out your melanocytes (the cells responsible for the pigmentation of skin).

It’s also a social disorder because it can make or break you socially; people see you all the time. Depending on how you feel about your Vitiligo, it can have an extreme effect on your self-esteem, your self-image. If you lack confidence or are insecure about your skin people feed off that. Whatever energy you give, people will pick it up, chew it and swallow it. But if you have confidence, people have no choice but to embrace it.”

Describe your journey with Vitiligo from diagnosis to today.

“I was diagnosed with Vitiligo when I was 10. From the beginning my mother was very overprotective because it started on my face. She immediately went out to get makeup because she didn’t want the kids to tease me. She wanted to shield me from the world. Back then in 1986, people didn’t know a lot about vitiligo. It was taboo. I remember my grandmother telling me, ‘you have Vitiligo, don’t let it get you. God gave this to you because he knew you could handle it. You don’t have to be ashamed or upset, own it.’ And I did.

That year my mom got a job in Germany where a world-renowned dermatologist, who developed a pseudocatalase cream, practiced. The cream applied different minerals to your skin that, when accompanied with UVB light treatment, would generate pigmentation. I lived in Germany until I received a full-ride scholarship to play basketball at Fort Hays State University where I continued using the cream and light therapy daily. It was during my sophomore year when I tore up my knee during a game and was recovering from surgery that my Vitiligo spread like crazy.

After college I moved from Kansas to Minnesota where I treated with Dr. Crutchfield. Fast forward to 2018, my Vitiligo got really aggressive and started taking over—I had more white patches of skin than brown and felt like I was losing myself. I love my Vitiligo but I didn’t want to be completely Vitiligo. I want to be brown and have Vitiligo. I think it’d be boring to be one color because I haven’t been one color for most of my life. I’m one of one and I love it. So I went back to Dr. Crutchfield and he said ‘your Vitiligo has gotten aggressive so we have to get aggressive.’ He had a new treatment called Excermer that focused on the face. Within days my pigmentation grew, and I got a little more brown on my face so I stopped treatment.

In 2020 the pandemic hit; I wasn’t in court anymore, I’m not putting on makeup, I’m just living my life. Once the death toll hit one million, I realized what was important and wanted to inspire others to embrace their differences whatever they may be. Every one of us has something we aren’t particularly happy with, wish was different or just something that’s unique to you, and I want to encourage, empower and motivate people to embrace their different, because different is beautiful.

On January 22, 2021, my 45th birthday, I unveiled my true, authentic self for the first very time on Facebook. I hoped not wearing makeup would encourage and inspire people to be yourself. One of my slogans is ‘my designer skin is my superpower.’ You have to trust your uniqueness. Never try to fit in, we’re made to stand out!”

Karlowba in our Women’s Calvada Cover-Up in Radiant Red Matira Palm

What do you wish more people knew about those living with Vitiligo?

“I want people to know that I’m not burned. We’re not burned. I’ve had people come up to me and pet my arm because they think my skin will feel leathery or raised, not soft.

Two, it’s not contagious.

Three, ask questions and don’t stare. I don’t take offense to questions. It can be a conversation piece or distraction. Thankfully, for me it’s not a bad distraction, but for some people it is. I can’t be in court talking about Vitiligo or arguing with you that my lips are my lips and not a lipstick color. These things happen, and that’s why I always covered my face with makeup.

I think kids are the best because they are so genuine, honest and innocent. I’ll hear a kid ask ‘what is that?’ And I’ll go over to them and say, ‘do you want to know what’s on my hands?’ Most parents thank me for taking the time to describe it to their kids.

Finally, I would tell parents to please, please step back and let your children lead the way. They will let you know when they need you to swoop in with your capes! Until then, they’ve got it. Let them live—they are resilient and can handle it! Out of love, my mom was immediately so overprotective, I feel like my Vitiligo affected her more than it did me.”

What is your sun protection regimen?

“Honestly, my sun protection routine sucks and I go everywhere it’s hot, like Dubai or Mexico. I know I need to protect my skin. SPF 30+ sunscreen is the only thing a dermatologist has ever recommended, but I have Vitiligo on over 90% of my body so lathering sunscreen everywhere is annoying—nobody wants to do that. But now that I’ve been introduced to Coolibar, I can wear my sun protection and am so excited about it! It’s huge for me that I now only have to apply sunscreen to my face.”

What do you like most about your Coolibar products?

“First, I love this [Calvada Cover-Up] dress, it’s so cute! I’m wearing it for the rest of the day. Usually, therapeutic clothes aren’t cute. And the fact that Coolibar is cute and therapeutic is a huge plus. I also love the material. It’s breathable, soft and actually has a cooling effect when you’re in the sun. You totally can feel it. “Coolibar clothes are simply amazing and I wish I would’ve had them before!”  

Follow @vitiligo_konfidence on Instagram to see Karlowba’s journey and her Coolibar favorites. A special thank you to Karlowba Powell for sharing her story with us and the Coolibar community!

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Skin Diaries

Vitiligo Patient Loses 100% of Her Skin’s Pigment

It was the perfect day to get married. The sun was bright, the weather was warm, and the beautiful valley stretched out around the field where the ceremony was taking place. Love was in the air and each moment of the ceremony was heartfelt and touching. Unfortunately, I missed most it. I was huddled under an oversized umbrella in the back row, trying not to burn in the sun as the couple said their “I do’s” – because skin without pigment can quickly turn pink.

I was seven years old when I was diagnosed with vitiligo. The little white spots on my spine seemed innocent enough, but the doctor had a different story. My mother was familiar with the disease – her mother, my grandmother, lived with vitiligo for most of her life. Still, she was devastated to hear the news, and worried about what this might mean for me.

Vitiligo is an autoimmune disease that causes loss of pigment, resulting in white spots on the skin and occasionally, loss of pigment in the hair too. About 1% of the world’s population (50 million people) has vitiligo and the condition affects all races and both sexes equally. Since the cause of vitiligo is unknown, there is no cure and treatments are often unpredictable and can vary in results.

It turns out, my vitiligo was aggressive. Although it started on my spine and knees, the spots quickly spread to the point that treatments were ineffective. We just couldn’t keep up with it, and I chose early on not to pursue treatment any further.

Growing up, it wasn’t unusual for me to have three colors of skin – tan, white and pink for my normal skin, my vitiligo and my burned vitiligo. In fact, this tri-color look earned me the nickname of Neapolitan in college. Staying sun-safe wasn’t necessarily hard – I just tended to forget.

Today, twenty years after my diagnosis, I’ve lost 100% of my skin’s pigment to vitiligo. With no color left in my skin, my complexion rivals that of Snow White’s – under my tanner, which I wear daily. As a result, protection from the sun is a requirement at this point in my life. Being exposed in the sun is just uncomfortable – in other words, I can’t forget.

Rachael Laurin Photography

Avoiding the sun is just another aspect of life I’ve learned to live with. I’m the girl who can’t go to the beach without an umbrella, and often a rash guard too. I’m the friend who makes the waiter switch our patio table to one with shade. I schedule my days around the sun’s rays and try to go outdoors in the early mornings or evenings after the sun begins to fade. I always ask about the shade situation for any outdoor activities – and excuse myself when appropriate.

Of course, I still get burned from time to time, despite my best efforts. That’s why I’m thankful for companies like Coolibar that not only provide education on sun safety but create real solutions to enjoying the sun without risking sunburn.

 

You can learn more about vitiligo and my journey at livingdappled.com, a lifestyle blog for girls and women with vitiligo.

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Events

It’s World Vitiligo Day (Almost!)

Coolibar - World Vitiligo Day

World Vitiligo Day is a public initiative aimed at building global awareness about vitiligo (pronounced: vit-til-EYE-go). The Vitiligo Research Foundation (see below) launched a website and an online petition, aimed at the United Nations, to highlight vitiligo and officially designate June 25 as World Vitiligo Day annually. The petition needs 500,000 signatures. It’s almost there!

And so you’re asking: what is vitiligo? It’s an acquired skin disease where the cells stop producing melanin – the pigment that gives color to skin – causing irregular white patches. There is no way to tell where the patches will form, or if they will spread; however, they are more common on areas of the skin that are exposed to the sun.

You might have heard of vitiligo because pop star Michael Jackson suffered from it. But since the beginning of history people all over the world, regardless of gender or nationality, have struggled with vitiligo. Today, as many as two million Americans have vitiligo. By many estimates, it affects more than 100 million people worldwide.

You’re also asking: why does the world need a vitiligo day? Vitiligo is not life-threatening or contagious. It’s not well-known compared to lots of other diseases and disorders. But let’s take a moment to realize what vitiligo does: Many of them are forced to live in the shadows of society. They become anxious and self-conscious. They often receive no support from healthcare providers or insurance companies. Depression and low quality of life is common among vitiligo sufferers.

The cause of vitiligo is unknown. There are accepted treatments depending on the severity, but no cure.

A petition has been created to officially designate June 25 as World Vitiligo Day every year. It is almost there. Click here to add your name to a list of 500,000 signatures needed to address the United Nations and highlight vitiligo.

Check out these resources on vitiligo:

VR Foundation
Firmly committed to curing vitiligo, the VR Foundation is a non-profit organization funding and fast-tracking medical research across the biomedical spectrum. The organization is committed to a mission of developing effective treatments for millions of people around the world who suffer from vitiligo.

Vitiligo Bond Inc.
Founded in November 2010, Vitiligo Bond Inc. (VBI) is a registered nonprofit 501c(3) organization that aims to provide support for those living with vitiligo. VBI is dedicated to funding research into the causes, prevention, treatments and a cure for vitiligo; increasing awareness of vitiligo spectrum disorders; and advocating for the needs of individuals with vitiligo and their families. Natasha Pierre, founder of VBI, is a current vitiligan.

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Educate Others Events SunAWARE

World Vitiligo Day

Today, June 25, 2013, is World Vitiligo Day, a day that aims to increase awareness of vitiligo and raise funds needed for research and education.

Michael Jackson, one of the most famous entertainers in the world, suffered from vitiligo. And even after his death it’s still one of the most misunderstood things about the king of pop. Vitiligo is a skin disorder in which there is a loss of color (pigment) from areas of skin, resulting in irregular white patches that feel like normal skin. It’s the reason one of the most famous men on the planet went from black to white.

Well over 100 million people from all over the world suffer from this disease. It affects all nationalities, ages, genders and levels of social strata.

Vitiligo is an acquired disease characterized by progressing skin depigmentation, due to destruction or malfunction of melanocytes, cells that produce melanin. It is present worldwide, and its prevalence in different countries ranges from less than 0.1% to more than 8% of general population (~1% in the United States and in Europe), while many cases go unreported due to the current dermatology practice.

Although vitiligo has impacted the lives of millions of individuals since recorded history, predominantly in the developing world, there is no cure in sight. And because it is not contagious or life-threatening, patients often receive no support from national healthcare systems or insurance companies whatsoever.

The World Vitiligo Day is a public initiative aimed at building global awareness about vitiligo.  Click here to join a list of 500,000 signatures needed to address the United Nations and highlight vitiligo.

Check out these resources on vitiligo:

VR Foundation
Firmly committed to curing Vitiligo, the VR Foundation is a non-profit organization funding and fast-tracking medical research across the biomedical spectrum. With bio-IT tools, it provides a collaborative an environment to bridge the gap between scientific frontiers and the patients who need treatment. The VRF has recently joined a group of biotech companies that are bypassing traditional mass-market cosmetic and orphan drug development indications to expedite product development.

Vitiligo Bond Inc.
Founded in November 2010, Vitiligo Bond Inc. (VBI) is a registered nonprofit 501c(3) organization that aims to provide support for those living with vitiligo. VBI has grown into a worldwide support group, through its Facebook and social media presence. As an advocacy organization, VBI is dedicated to funding research into the causes, prevention, treatments and a cure for vitiligo; increasing awareness of vitiligo spectrum disorders; and advocating for the needs of individuals with vitiligo and their families. Natasha Pierre, founder of VBI, is a current vitiligan. Her experience in living with the skin disorder has given her the passion and understanding of vitiligo.

Click image to share on Facebook:

American Academy of Dermatology
The AAD is the largest, most influential and most representative dermatology group in the United States. With a membership of more than 17,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. Read what the AAD says about vitiligo and the importance of sun protection. Find a board certified dermatologist.

Read about other famous people with vitiligo: NY Jets DL Coach Karl Dunbar – Seeing Beyond My Vitiligo.

Michael Jackson photo credit: https://en.wikipedia.org/wiki/Michael_Jackson

A portion of this post is part of a news release originally published by the VR Foundation.

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Wellness Warriors

Life Lessons from Coach Karl Dunbar

NY Jets Defensive Line Coach, Karl Dunbar, has lived with vitiligo since the 7th grade. In case you don’t remember, being different in the 7th grade is a big deal. Vitiligo is a chronic disease that causes a loss of pigment in the skin and can be treated but not cured and has helped shape Coach Dunbar into the man he is today.

Now, Dunbar lives his life with passion and understands that he is defined by what he does, not by how he looks…and this guy has done a lot. Karl embodies the message of acceptance in his every day life since his “difference” is always on display to the outside world –a valuable life lesson for us all to remember.

As a role model for those living with vitiligo or any limiting medical condition, Coach Dunbar sheds some light from his own experiences.

1. How has living with Vitiligo defined you as a person?

I feel as if Vitiligo hasn’t defined me, but I have defined it. Vitiligo doesn’t stop me from doing anything I want to do but in some instances it open doors for me because it’s an ice-breaker.

2. At what age did you realize that what you do is more important than how your look?

Early in my life, I realized that people judged books by their covers and not their content, so I knew that actions speak louder than words, so I always tried to do what was right.

3. Was there a single defining moment when it became clear to you what you were meant to be doing? What was that moment?

When I was a young Coach, I figured that God put me here for a reason and I started to seek that reason. As I got closer to Him, he made it clear, that I was here to mentor young men and women and help them be happy with who they are and not what others think of them. The moment was 1998 and I was a first year coach at Nicholls State in Thibodeaux LA. I started a players Bible Study with Josh Higgins. Josh and I are still friends and he’s over Chi-Alpha at LSU now.

4. Was there ever a time when you felt like giving up, when your dreams seemed impossible?

I don’t think of giving up now because I’m stronger, but when I was younger, I thought of giving up every day. I hated the way people looked at me and stared at me. Once I became happy with me, the stares were welcomed. I just said to myself that they were looking at a beautiful piece of art (that God made). My dreams never seemed impossible to me because it wasn’t about how I looked. It was about my ability.

5. What is your personal philosophy on how to live with your skin condition? 

My philosophy on how to live with my skin condition is to love you first, and then others will. It’s hard for others to love us when we don’t love ourselves. We put off negative vibes. I like the saying by Terrell Owens “I love me some me.”

6. What career accomplishment are you most proud of?

My proudest moment in my career to this point is the six years I spent in Minnesota and the men I helped mentor as a coach and a person. The next chapter is now in New Jersey with the Jets.

7. What personal accomplishment are you most proud of?

My proudest personal moment is helping my wife raise our kids to be great people – an accomplishment that’s a lifelong labor of love.

8. What do you teach your children about living with vitiligo?

My kids grew up with me having vitiligo, so it wasn’t until they were 9 or 10 years old when I explained to them what it was. The thing that I hope they learned from all the talks we had is whether or not a person becomes your friend shouldn’t depend on how they look or what they have, but on how they treat you (actions/content).

9. What do you want others to remember, when they are going through a difficult time and feel like giving up?

When people are going through difficult times, the one thing I hope they would remember is the only power people have over you is what you give them. I’ve always believed in something greater than me and that’s God.

Coach Dunbar

P.S. The Dunbars are all safe. Witnessed a lot of destruction, but the crews are busy at work. Lets go NJ and NY!

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SunAWARE Wellness Warriors

Coach Karl Dunbar Talks NFL Training Camp

With only a few weeks of summer left, the NFL Training Camps are kicking into gear this Thursday, July 26, 2012. Karl Dunbar, defensive line coach for the New York Jets (former DL coach for the Minnesota Vikings) talks about how he’s preparing for the weeks ahead and what he loves most about training camp.

1. How would you best describe training camp from a coaching perspective?

The best way to describe training camp for a coach that goes off to camp is “sanctuary”. It’s a time to get away and focus just on football!

2. What are you most looking forward to this training season?

The thing I’m looking forward to the most is getting to Cortland, NY and getting to know my new guys! With the limited days of OTA’s and MiniCamps, it’s hard to really see them in physical action. This will be the time!

3. How long do players train each day during training camp?

The players only get four hours on the field, but the meeting time is limitless. That is why I love going to camp. They have nowhere else to go, they are all yours!  🙂

4. Is it mostly outdoors?

I think most practices will be outdoors if weather permits. It’s that time of year you need to be outside and it helps because we play outdoors alone with Miami, New England and Buffalo.

5. How do players protect themselves from the elements (heat and sun)?

The trainers do a great job of keeping the players hydrated, and we feed them well so they keep their weight up. We do let them get their rest too. Being away at camp helps limit the players access to outside sources (family, friends and curfew keeps them off their feet).

6. What is your role in guiding players during training camp?

My role as a “Coach” is to get these guys ready to play at a high level. I have to teach them proper technique and make sure they learn our playbook so they know what to do. It’s fun because I’ve played the position at this level, and I can relate to what most of them are going through.

7. How do you protect yourself from the sun during training camp?

Over the years, I’ve protected myself from the sun with sweatshirts and sunscreen. Now that I have Coolibar gear, I will be using that to protect my skin from the sun along with sunscreen! Lightweight Coolibar clothing is just what the doctor ordered. It protects me from the sun and keeps me cool in the process.
 

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