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After 25 Years with Lupus, Still Going Strong

Jan Jundt - Coolibar 5K Lupus Walk

Can there be any disease as grueling and, often, mysterious as lupus?

Certainly not for Jan Jundt, 2014 ambassador for Lupus Foundation of Minnesota, who was diagnosed in 1989. “I thought at the time that it was arthritis,” Jan says. “I was having trouble getting my hands open, and walking stairs. I was really afraid it was arthritis – my family has a long history of arthritis.”

Back then it was very common even for doctors to diagnose lupus as something else, she says, and not just in her home town of Bismarck, North Dakota. “For years lupus was misdiagnosed completely,” says Jan, on the eve of the foundation’s 17th annual Lupus Walk for Hope and 5K Trail Run – Twin Cities.

The Onset

Jan Jundt Coolibar Lupus 5K
Jan Jundt

Jan is married; her husband Dave recently retired from the North Dakota National Guard. Last spring the couple moved to Fargo, ND from Bismarck to be closer to their three grown daughters.

Also: 25 years ago, lupus nearly killed her.

“I thought it was arthritis,” Jan relates. “In a visit to my allergist he said: ‘go see a rheumatologist.’ The look on his face was, ‘you do it now.’” She got an appointment the following week – a miracle in itself. After tests were run, her rheumatologist called to say she had lupus and wanted to visit with her and her husband.  She scheduled a follow-up at the end of the next week.

“And I didn’t make that appointment,” Jan says. “The night before, I crashed. I had complete renal failure. Basically the only things functioning were my heart and my brain. They gave me 24 hours to live.

I don’t remember the next 10 days, and my husband says well, that’s a blessing. You don’t want to know.”

Another time, much more recently, she had another scare. “I had come down with pneumonia. I just thought it was my allergies, and my asthma. We were driving to Minneapolis and I collapsed. That’s the lupus; if you have a weakness in one spot, it just goes for it.”

What’s most striking about this is her positive, enthusiastic tone, even when the subject turns dark. How can you ensure that these frightening episodes do not happen? “You can’t,” she says.

What is Lupus?

If anything about lupus can be simple, here’s the simplest explanation – lupus causes the immune system to malfunction. It mistakenly starts creating auto-antibodies that normally guard the body against bacteria and viruses. Instead, they attack and destroy healthy tissue. This can result in a very wide range of symptoms – pain at the joints, fever, fatigue, headaches and sensitivity to the sun among them.

Lupus Walk for Hope, Plymouth, MN
Lupus Walk for Hope, Plymouth, MN

Like most other people, Jan knew none of this. Following her first harrowing episode, she started researching the disease.

“I could not get any information about lupus,” she says. “Every place I called, I was finding dead ends.”

The one certainty: there were lots of others suffering from lupus, and they likely had no place to go either.

The Support Group

Jan and her husband started a lupus support group 24 years ago in Bismarck, ND. She found a catalyst for it in the Lupus Foundation of Minnesota, which provided the help needed to start the support group.

The group meets the second Thursday of every month. There are about 15 people in the group, Jan says, with a core of about a half dozen. The group first met at night, but switched to mid-days after fatigue became a problem. There are also frequent transportation issues in a community with lots of rural areas; “the community has been very good to us,” she says. “They help whenever they can.”

Team Coolibar at Lupus Walk
Part of Team Coolibar, Sept. 13

Still, the resource has become irreplaceable.  “I have learned the most from those who have lupus,” says Jan. “People come for different reasons. “Some people come when they’re not feeling good, and need some support. Others come when they are feeling good, and just want to be around people.”

Going Strong

Since her move to Fargo, North Dakota last May, Jan can no longer attend the group she started. But it’s still going strong. On Saturday, September 13, she walked along with Coolibar team members as the official ambassador for Lupus Foundation of Minnesota in the  Lupus Walk for Hope and 5K Trail Run – Twin Cities.

“Our goal is to help one person,” she says. “If we can do that, we’ve done our job.”

For information on Coolibar sun protective clothing, visit our site!

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Inside Coolibar What's Hot

What the Heck is a Rash Guard?

Coolibar Boys Rash Guard

And why should you buy one? If you grew up in Australia, as Coolibar founder John Barrow did, you already know the answers to these questions. If you didn’t, allow us to explain.

A rash guard is almost always a shirt, specifically one that’s worn in or around water. This might seem strange; after all, we have swim shirts and wraps and beach cover ups that do the same thing, right? But the original Australian rash guard was called a rash guard (or “rashie”) for its ability to protect against rashes.

In thCoolibar Rash Guard for Mene beginning, rash guards were almost exclusively for men. Almost all of these men were surfers and most of the rashes came from chafing – against fast-moving water, or against sand caught in waxed surfboards. These rash guards fit very tightly so they didn’t rub against the skin at all; sometimes people even used them underneath wet suits to protect them from neoprene chafing.

Rash guards were normally fashioned from combinations of polyester, nylon, lycra or spandex for stretch, breathability and quick-drying properties.

All of the above is still true today. But nowadays you don’t have to surf to wear a raCoolibar Rash Guards for Womensh guard (in fact there are specialized rash guards for a variety of sports including baseball).

You don’t have to be a guy, either – women’s rash guards are available in a range of colors and styles.

In fact: you don’t even have to be athletic to wear a rash guard. It helps…but it’s no longer necessary.

Much of this is because many of the “rashes” that today’s rash guards prevent are not caused by surfboards or saltwater or too much body motion. Rash guards today actually guard against the sun’s UV rays – good old-fashioned sunburn.

That means UPF 50+ sun protection. And all of a sudden, a rash guard isn’t so strange after all.

 

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Events Inside Coolibar

Twin City Tennis Camps Hosts Coolibar Talent Show

For the past two years Coolibar has worked closely with Twin City Tennis Camps (TCTC), an organization that operates tennis camps across Minneapolis and St. Paul, Minn. This is part of an ongoing effort to help parents and community leaders promote sun safety at an early age. What better place to do it than on the tennis courts?

Still, Friday, July 18 was a first: a Coolibar-themed talent show performed by TCTC staff and junior tennis students at the Golden Valley Tennis Center at Brookview Park.

This is just one performance:

Here are some more highlights:

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TCTC operates five tennis camps across the Twin Cities and provides “an energetic, athletic, cooperative and educational style…that keeps everyone smiling, playing tennis and making lifelong lasting relationships.” The organization also operates adult tennis camps and attends annual tournaments in Minneapolis, Minn. and Palm Springs, Calif.

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Inside Coolibar What's Hot

Latest Fashion Trend: The Bucket Hat?

Coolibar Bucket Hat

We first started hearing rumblings about his about a year ago, when some of the hip fashion bloggers started saying the bucket hat was a thing again. We love bucket hats; admittedly, we have an extra-large crush on them because they protect your face. But we last saw our friend the bucket hat as a major fashion player in like 1999. We thought these rumblings would go away.

They didn’t. Instead, they got stronger.

And stronger. Rihanna in a bucket hat? That’s a long way from Gilligan, or even LL Cool J. The latest homage comes from Refinery29, and we’re sure there will be more.

Coolibar has always offered bucket hats, but if there’s going to be a trend we’re more than “Happy” to throw our hat into the ring.

Of course, Coolibar bucket hats have an extra bonus: they’re UPF 50+. How much trendier can you get?

 

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Events Inside Coolibar

Coolibar Goes to Camp

Coolibar at AAD Camp Discovery

One sunny morning last week, Coolibar employees got up early, grabbed their gear and made the three-hour journey from Minneapolis to Crosslake, Minnesota to attend Camp Discovery. This one-week summer camp for kids with chronic skin conditions is operated by the American Academy of Dermatology (AAD), and encompasses five such summer camps across the country.

During the afternoon the camp split into eight teams, and each composed a skit or song about sun protection that they presented to the larger group. Afterward, everyone headed to the lakeshore for some sun safe swimming. Coolibar passed out UPF 50+ swim shirts and sun hats to 98 campers and staff!

Crosslake is the original location for the AAD’s Camp Discovery, and it includes Camp Little Pine (for ages 10 – 14) and Camp Big Trout (ages 14 – 16). This is the third consecutive year that Coolibar has dropped in for a visit.

Check out our fun photos!

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Educate Others Events Wear Sun Protection What's Hot

July is UV Safety Month!

July - UV Safety Month

It seems there is a month for everything, but this one comes directly from the US Department of Health and Human Services: it’s UV Safety Month!

This makes sense. July is one of the hottest months in the US, and it’s also right in the middle of prime vacation time. As we know, UV rays from the sun are the main cause of skin cancer, which is the nation’s most common type of cancer. And that’s not to mention the painful sunburns, dry skin and wrinkles that UV rays can cause.

Coolibar supports the efforts of the United States HHS department and the Federal Occupational Health agency to raise awareness about skin cancer and the dangers of UV rays. They include encouraging families to adopt good sun safety habits together, to include wearing sunscreen; we would add don’t forget your UPF 50+ sun protective clothing!

Watch for posts throughout July about UV safety for your skin and even for your eyes!

Melanoma/Skin Cancer Detection and Prevention Month

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Inside Coolibar New Products What's Hot

Is This A Magic Dress, Or…?

Coolibar Coastline - Beach to Street

We haven’t seen anything like what’s going on with our new Coastline Cover Up Dress.

We’ve talked to a LOT of people about this. And most have told us that when they saw the Coastline Cover Up Dress in our catalog or online, they didn’t even notice it at first.

They think it looks okay on the model. But when they put it on themselves – BOOM.

They love it. We don’t know anyone who owns the Coastline Cover Up Dress that doesn’t love it. Everyday girls love it. Bloggers love it, too.

We can only say it’s a magical dress. We suspect we might be the first clothing company, sun protective or not, ever to create a dress like this. But we don’t know for sure.

Tell us here.

Or comment below!

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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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Apply Sunscreen Avoid UV & Seek Shade Educate Others Events Routinely Check Skin Sun Protection Clothing Wear Sun Protection

Today is Don’t Fry Day!

Dont Fry Day - National Council on Skin Care Prevention

Just before the outdoor summer festivities begin in earnest, a reminder: the National Council on Skin Cancer Prevention has designated today as Don’t Fry Day.  This annual, national campaign takes place every year on the Friday before Memorial Day to help people keep sun safety in mind.

Here are some of the ways the council recommends to keep yourself and your family healthy for the summer and for a lifetime.

 

  • Do not burn or tan
  • Seek shade
  • Wear sun protective clothing
  • Generously apply sunscreen
  • Use extra caution near water, snow and sand
  • Get vitamin D safely

The council also takes a page from Australia’s effort to prevent skin cancer and reminds you to Slip on a shirt, Slop on a broad spectrum SPF 30+ sunscreen, Slap on a wide-brimmed hat and Wrap on sunglasses whenever you’re outdoors.

It’s also important to visit your dermatologist at least once a year, and watch for new or changing moles and skin growths.

Enjoy your summer – and stay sun safe!

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Ask Olga: Chat Live with the Coolibar Design Director June 3 on Facebook!

Olga Mashkova - Coolibar

If you’re wondering about the latest Coolibar apparel and how to wear it best, or if you already have thoughts about what you’d like to see next season, this event is just for you.

On June 3, Coolibar is hosting a live Facebook chat featuring Olga Mashkova, Coolibar’s Director of Women’s & Children’s Design.

Olga will be standing by to answer your on questions about Coolibar fashion and sun protective clothing. To participate, just click onto the Coolibar Facebook page. Everyone is welcome!

  • Who: Olga Mashkova, Design Director
  • What: Live Facebook Chat
  • When: Tuesday, June 3
  • Time: 1:00 – 2:00 pm (CST)
  • Where: Facebook.com/Coolibar

A few examples of questions that Olga can answer for you:

  • Which Coolibar items are you most excited about this summer?
  • How should I coordinate your new swim base layers?
  • I have an idea for a print/style…
  • What’s the biggest trend for 2015?

RSVP yes before Tuesday, June 2, and be entered into a drawing for Olga’s top pick for summer 2014: the Ruche Swim Shirt, featuring a quarter-zip neckline, straight, clean cuffs and hems and the versatility to wear long as a tunic or elegantly cinched at the sides.

See you there!

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