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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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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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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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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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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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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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Monopoly Man: A Survivor Lives On

Jerry Dalton - Cooibar Melanoma Survivor Series

Note: Throughout May, Coolibar highlights melanoma survivors to call awareness to the dangers of melanoma. This week: the terrifying, ongoing journey of Jerry Dalton.

We thought that we wouldn’t get to meet Jerry Dalton, the certified rescue diver. Or Dalton the outdoorsman, the avid fisherman, or the deceptively tough jokester who worked for the maximum-security George Beto Unit in the Texas prison system, the guy who “could always handle what was going on.”

But really, we did. We met Jerry Dalton: survivor.

And this tough jokester known as Monopoly Man (so named by prison inmates when his mustache grew back white and bushy like the character on the Parker Brothers game) is still very much alive.

In an early communication about his schedule he informed us that “I will be fishing. Or swimming, depends on my balance that day.” That turned out to be a reference to what can happen when you combine the effects of long-term melanoma treatment with the effects of standing in a small, tippy boat.

Nerve damage prevents Jerry from lifting his left arm above his head; “fortunately, I’m right handed,” he says. “It’s just not so fortunate when you fall.” He also reports that he is numb from his face all the way down into his chest. “So…just another thing. It’s a perfect place to get shot I guess.”

A Harrowing Journey

Dalton’s battle with melanoma began in September 1999, shortly after his doctor had removed a mole from his left ear. Jerry was driving to Laredo, Texas with Mary, a medical technologist who would soon be his wife (and who plays no small part in this story; she is still by his side today). “I hit my ear with my finger,” Jerry says. “And it bled and bled and it wouldn’t stop. My wife suggested I switch doctors.”Jerry and Mary Dalton 1

Day surgery seemed to correct the problem – “you couldn’t even tell (anything had happened) when it healed,” Jerry says – until the biopsy results returned.

“It came back melanoma,” said Dalton.

A doctor in Amarillo did not hesitate to refer Jerry to Anderson Cancer Center in Houston. There was further surgery there. This time, “they had cut from the top of my ear all the way to the bottom of my throat,” Jerry says, “and (they) removed 40 lymph nodes.”

The cancer appeared in three.

“I was scared,” Jerry says. “But I didn’t really understand it at that time.”

Then came the first of what would be 10 years of PET (positron emission tomography) scans, which create images to show the possible spread of cancer cells –  “At that point it was like ‘why aren’t I glowing now?’” says Jerry – and one year of grueling interferon treatments.

He remembers places, and events. His first transient ischemic attack (TIA, or mini-stroke. A second, more severe TIA in Amarillo, and the doctors recommending he stop the treatments (“I REFUSED!” Jerry says). The day, during his first three-month PET scan, that doctors discovered an aortic aneurysm.

“I thought: oh, brother,” says Jerry. “I beat cancer, and now I’m gonna die of an aneurysm.” Open heart surgery in 2011, during which he received a mechanical heart valve “and a warranty card to boot.”

There were years of moving around and dealing with dwindling finances. Jerry went on disability in 2007; the couple lived in Clinton, Missouri and Palestine, Texas. Jerry and Mary bought several rental properties, selling all but two before the housing crunch. Mary moved to Lufkin and lived in a travel trailer for a while before they purchased their current home there (which “needs help…more than I do,” Jerry says).

This is an important part of the story: during this long period, Jerry was often stuck indoors. Sometimes, due to either the medical event or the treatment, he was unable to eat or talk. The outdoorsman was now wondering about the most basic activities.

“Who’s gonna mow the lawn?” Jerry remembers asking himself. “If I couldn’t do that, I’d have gone nuts.”

Surviving – and Living, Too

This is Jerry Dalton today: he speaks in a husky tone (one vocal cord is paralyzed). His vision is impaired from the strokes. He has a mechanicalJerry Dalton 2 heart valve. He used to weigh 240 pounds; now it’s more like 175. He’s accident-prone; the other day a piece of 2×6 lumber “fell out of my hand,” he says. “Now I have half a black eye…even my doctors look forward to seeing new bruises.”

Jerry Dalton is also cancer-free, and has been since 2011. “The best time was when they said, ‘you don’t need any more treatments. You are free to go,’” says Jerry.

What is most amazing is that he tells this story with a lightness of spirit that lets you know you’re speaking with Jerry the melanoma survivor and Jerry the adventurous rescue diver all at once.

“The biggest challenge for me was just doing the things that I want to do,” he says. “I’m still able to drive and do things like that. But it was all so rough on my body that anything strenuous, especially climbing stairs, has gotten crazy. And the hardest part was dealing with all that.”

Talking helps. Jerry has written a book, as yet unpublished, about his experiences. He reaches out to anyone who will listen about the dangers of melanoma and ways he’s discovered to effectively deal with a diagnosis.

For him, that has been a long-term effort to strike a balance. The former highly active life in and around the water must blend into his more recent existence, which for quite a while has included being afraid to step outside.

“I was so worried at the time to go out in the sun…we had to do something,” Jerry says. “After going through all this stuff with melanoma, and me not being able to go outside, I was scared to death. One of our first things was researching (protective) clothing.”

This was several years ago now, but the clothing remains – Jerry is never without a full-featured Coolibar hat, such as the Ultra Sport Hat, and a Coolibar UPF 50+ shirt. But the fear is subsiding. Jerry credits Coolibar clothing with providing a new freedom, the ability to live and play outside again without worrying about the sun’s UV rays and a recurrence of melanoma.

Mary DaltonA word about Mary: “There is no way I could have done all this without her,” Jerry says. In his mind he goes back in time to a car ride in 1999, and the diagnosis that immediately followed, and all that lay ahead.

“I said, “well, I don’t expect you to deal with this; I’ll just go back to my family,’” Jerry says. “And she said, ‘I don’t think so.’”

In late April, Jerry participated in the Sealy Outdoors Big Bass Splash at Sam Rayburn Lake in the couple’s newly purchased (actually it’s 37 years old, and as yet has no sun canopy) bass boat. That was his first venture out into the sun and water in many, many years.

This is Jerry Dalton, true to form: “I fished Friday am, it was so rough & full of boats that made mine look like a baby boat. I fell Thursday evening while trying to sit on the upper seat. This hurt so much, that I did it again Friday. I was out-fished this year. (But) it won’t happen again!”

 

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It’s Melanoma Monday. How Much Do You Know?

Coolibar - Knowledge for Melanoma Monday

As it does each year, the American Academy of Dermatology has designated the first Monday in May as Melanoma Monday®. This chance to promote melanoma awareness and prevention is important to us at Coolibar, because we meet people who live with their melanoma diagnoses every day – and because we meet people who are not familiar with melanoma at all.

Knowing about melanoma can save your life – and sharing what you know can save others! Here is a short list of what we’d like people to understand about melanoma.

Melanoma is the Deadliest Form of Skin Cancer.

Some people understand skin cancer treatment as “you find a mole on your skin, you have it removed, that’s it.”

In fact, the majority of melanoma cases involves wide-excision surgery and a lymph node biopsy to determine if the melanoma has spread to other organs. This may be followed by a regimen of immunotherapy, chemotherapy or radiation treatments. In all cases, the possibility of recurrence must be carefully monitored. For melanoma survivors, the letters NED (no evidence of disease) become vitally important for many years.

Melanoma Affects Young People Too.Melanoma affects young people - Coolibar

The AAD says that melanoma is the most common cancer for young adults 25 to 29 years old, and the second most common for adolescents and young adults 15-29 years old.

It’s Easier Than Ever to Prevent Melanoma.

The single best way to prevent melanoma and other skin cancers is to limit exposure to the sun. But some people think that means giving up their favorite activities. Instead, here are a few simple tips to keep you active and healthy:

  • Apply a broad-spectrum sunscreen of at least SPF 30, and reapply after swimming or strenuous activity.
  • Wear sunscreen every day – up to 80% of the sun’s ultraviolet rays can reach your skin even when it’s cloudy.
  • Seek shade when necessary.
  • Wear sun protective clothing!

Meet Some Amazing Melanoma Survivors.Coolibar Melanoma Survivors May 2014

Each week during Melanoma/Skin Cancer Awareness Month, we’d like you to meet several very courageous people who can tell you about melanoma much better than we can. Their stories are powerful, personal and inspiring (and, unfortunately, similar to many others from people all over the world). But each one will change the way you think about your health and your life.

We’ll introduce the first of these people on Thursday, May 8.

In the meantime, help us spread the word about melanoma!

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Educate Others Events SunAWARE

Let’s Help Spread the Word About Melanoma!

Coolibar - Melanoma Awareness Prevention Month

May is officially Melanoma/Skin Cancer Awareness Month, and Coolibar kicks it off with another boost for awareness, detection and prevention of melanoma – the deadliest of skin cancers. Together, melanoma, squamous cell skin cancer and basal cell skin cancer make skin cancer the most commonly diagnosed form of cancer in the U.S.

At the same time, according to the Melanoma International Foundation (MIF), efforts to prevent melanoma/skin cancer are the most underfunded of all cancer types. The foundation says melanoma is the least screened cancer, and melanoma detection is not a training requirement for most medical disciplines.Coolibar - Poolside Sun Hat

What Can We Do?

The MIF says:

  • Seek shade and avoid direct sun during the peak hours of 10-4
  • Cover up with protective clothing and use sunscreen lotion
  • Protect your children and role-model sun safe behavior
  • Examine your skin and that of your loved ones each season for any changes that should be checked by a dermatologist
  • Avoid tanning salons: 15 minutes is equal to a whole day’s exposure at the beach!

What Else Can We Do?

Let’s stay aware! Most people don’t realize how a melanoma diagnosis changes someone’s life. Do you?

Coolibar has some special posts ready for you this month. Each week you can meet a melanoma survivor with a story that will amaze you. If you don’t know much about melanoma, these personal stories will help you learn about it quickly. They should also give you a nice dose of motivation. One thing we’re sure of: by the time you finish hearing from these people, you’ll have a different outlook on life.

Key Dates

Our first featured melanoma survivor will be introduced next week, following Melanoma Monday® on May 5. The American Academy of National Council on Skin Cancer Prevention Dont Fry DayDermatology (AAD) has designated the first Monday of each May to raise awareness of melanoma and other types of skin cancer and to encourage early detection through self-exams.

Also, the National Council on Skin Cancer Prevention declares the Friday before Memorial Day as Don’t Fry Day to encourage sun safety awareness. This year, Don’t Fry Day is on Friday, May 23.

Stay up to date with Coolibar activities on Facebook, Twitter and Pinterest. Another great way to stay aware during Melanoma/Skin Cancer Awareness Month is to sign up for our weekly emails at Coolibar.com. You’ll get links to all of our stories, plus some extra savings on Coolibar merchandise!

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