Expert Rx SunAWARE

Caring for psoriasis in the summer

If you’re one of the 7.5 million Americans living with psoriasis—the most common autoimmune disease in the country—summer can be a blessing and a challenge. Psoriasis often improves with warm weather, but many people with psoriasis are also self-conscious about showing their skin.

While symptoms of psoriasis may improve due to extra sunlight and increased humidity, it’s important to make sure psoriasis doesn’t flare. Here are some tips from the National Psoriasis Foundation to help keep your skin healthy.

Limited sun exposure

Sunlight can be beneficial for psoriasis. As with any treatment regimen, be sure to talk with your doctor as they can recommend the appropriate amount of sunlight. They can also caution you about how the sunlight may affect your current psoriasis treatments. Some medications may be inactivated by sunlight, while others may make you more susceptible to sunburns and side effects.

In addition to skin cancer risk, sunburn can worsen existing psoriasis or cause new plaques, known as the Koebner effect. Avoid overexposure and wear sunscreen on areas without psoriasis. Experts suggest starting with just a few minutes of sun at a time and gradually increasing exposure if your skin tolerates it. Look for water and sweat-resistant, fragrance-free sunscreens and wear sun-protective clothing when outdoors for longer periods of time. Read more about sunlight and psoriasis.

Beware of bug bites

Bug bites and poison oak/ivy can also trigger psoriasis. To protect from bug bites, cuts and scrapes that could worsen psoriasis, apply an insect repellent with little or no DEET. Covering up can help, too. Loose, cotton clothing is best to avoid skin irritation from sweating or itchy fibers.

Swimming

For many psoriasis patients, salt water and swimming pools can soften skin and plaques. Chlorine can dry out skin, so be sure to shower immediately after swimming with chlorine-removing shampoos and soaps. Apply moisturizer to damp skin to lock in moisture, and try thick creams and ointments, which are more hydrating than lotions. Be careful with hot water and long soaks in hot tubs as they can increase itching and irritation.

Get more information on managing psoriasis in the summer at www.psoriasis.org. Have specific questions? Contact a health educator at education@psoriasis.org.

Disclaimer: The information provided by Coolibar and its contributors is general skin care information and should not be a substitute for obtaining medical advice from your physician and is not intended to diagnose or treat any specific medical problem.

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Apply Sunscreen SunAWARE Sunscreens and Lotions

Study confirms regular sunscreen use prevents photo-aging

Fifteen minutes of sun exposure does more than sunburn fair skin, it ages skin too. The good news is with daily use of broad-spectrum sunscreen, people can prevent photo-aging.

Even though dermatologists currently recommend daily sunscreen use to patients for wrinkle, age spot and skin cancer prevention, a new Australia based study in “Annals of Internal Medicine” provides the most extensive evidence of sunscreen’s anti-aging effectiveness to-date.

900 Caucasian participants in Australia under age 55 were randomly split into two groups. Group one was instructed to apply sunscreen to their head, neck, arms and hands every morning, after a few hours of outdoor sun exposure or after being in water or sweating. Group two was told to use sunscreen at their leisure.

Two-thirds of all participants had small skin samples taken from the back of their hands at the beginning of the study. Four-and-a-half years later, researchers once again excised a skin sample from the same participants, but the results of the study turned out to be more visible than expected. Those who applied sunscreen daily displayed younger looking skin than those who used sunscreen at their discretion.

Aussies are already known for their diligent sun protection habits but not necessarily motivated by anti-aging efforts. Australia has the highest incidence of skin cancer of any country in the world. Almost two out of three Australians will be treated for some form of skin cancer during their lifetime and melanoma is more commonly diagnosed than lung cancer. Factors contributing to Australia’s skin cancer rates include the generally light skinned population, the active outdoor lifestyle, depleted ozone layer and the country’s proximity to the equator. According to the “NY Times”, most participants, regardless of which group they were assigned, were using sunscreen at least some of the time, and two-thirds wore sun hats.

It’s never too late to start using sunscreen. Dr. Nancy Snyderman, NBC’s chief medical editor reported on the “Today Show”, “Even if you’re 55 you can still roll back the clock two or three years”.

Choosing the right sunscreen is essential for the protection to be effective. In the study, participants used broad-spectrum sunscreen, which blocks both ultraviolet-A and ultraviolet-B rays, and sun protection factor (SPF) of 15. Reapplication throughout the day was also essential.

For complete sun protection, dermatologists recommend wearing sun protective clothing, a wide-brim hat, UV 400 sunglasses, and applying a broad-spectrum sunscreen with SPF 15 or greater.

Shop sun protection

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Contests Events Inside Coolibar What's Hot

#WhereICoolibar Photo Contest – Win a $500 Shopping Spree!

Want a chance at winning one of three $500 Coolibar shopping sprees this summer? All you need to do is show us where you Coolibar!

Coolibar Sun Protection You Wear is useful beyond the beach. Our expansive line offers UPF 50+ protection for travel, exercise, work and even outdoor parties. Share where you Coolibar with us on any Coolibar social media site.

To Enter the #WhereICoolibar Contest:

1. Like or follow Coolibar on any one or all of these social media sites:

Facebook, Twitter, Pinterest, Instagram

(If you’ve already done this, move on to step 2, and thanks for being a fan!)

2. For one (1) entry, post a photo on the Coolibar Facebook, Twitter, Pinterest or Instagram site of you in your Coolibar sun protective clothing. Use hashtag #WhereICoolibar and tell us where you are. Earn up to four entries by posting a different photo (one photo = one entry) on more than one Coolibar social media site. While it’s not required, we’d also love to hear what you’re wearing.

Judging: Our customer service team has a keen eye for Coolibar. They will be voting for their favorite photo in two categories:

Best Coolibar on location/travel photo. Example:

Coolibar’s Founder John Barrow sitting under a giant strangler fig in his Coolibar Travel Shirt and Sun Hat in Australia. #whereicoolibar

 

Best Coolibar family and/or kids photo. Example:

Playing in @Coolibar UPF 50+ Romper at local pool and playground! #whereicoolibar

Deadline for entry: Monday, July 15, 2013 at 11:59pm CST. We’ll announce our winners Friday, July 19, 2013. Good luck!

Rules: To enter, you must be 18 years of age or older. Contest open to residents of the 50 United States and District of Columbia. The winners will receive one (1) of two (2) $500 (five-hundred-dollar) shopping sprees to www.coolibar.com to spend on Coolibar branded items. Winner will be chosen by Coolibar customer service based on the categories above. Comments and photos deemed inappropriate by Coolibar, or not owned by the posting individual, will be deleted and disqualified. No purchase necessary to win. Prize is non-transferable, not returnable and cannot be sold or redeemed for cash. Four entries maximum per person. Coolibar, Inc. employees, employee family members and affiliates are not eligible to win. Contest rules subject to changes at the discretion of Coolibar. Facebook, Twitter, Pinterest and Instagram are not affiliated with Coolibar, Inc. or this contest. Deadline for entry: Monday, July 15, 2013 at 11:59pm CST.

Share a photo now: Facebook, Twitter, Pinterest, Instagram

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New Products Sunscreens and Lotions

Sunscreen Talk: CoTZ and Total Block Explained

Two of our favorite sunscreens at Coolibar, CōTZ and Total Block, provide excellent UVA and UVB protection; however, there are some differences you should know about. We invited Justin Dannecker of Fallene to answer some of the most common questions we get from customers regarding these sunscreens.

Please provide a brief background of the company, your mission, and what you’re working on these days.
Fallene, Ltd. was founded by board certified plastic surgeon and dermatological chemist Dr. Harry Fallick. He had the idea to formulate a product with superior protection for individuals with photosensitive skin. Thus Total Block was created. Continuing along the path of photo-protection innovation came Fallene’s latest sun protective product–CōTZ. CōTZ sunscreen offers maximum protection for individuals that may have sensitive skin and are concerned with chemicals found in many sunscreens. For example, CōTZ Balanced Mineral Complex™ is free of oils, fragrances, preservatives, parabens, PABA, gluten, phthalates, does not irritate or sting and is gentle enough for all skin types.

What is the difference between your CōTZ brand and Total Block brand?
Total Block contains 5 sunscreen filters (2 physical and 3 chemical) for a very protective barrier against UV radiation and even into the visible light spectrum. These products are for someone who needs the ultra high protection.

CōTZ contains only physical sunscreen filters: titanium dioxide and zinc oxide. These products are for people who have sensitive skin and are concerned with chemical sunscreen filters. Both lines contain the #1 and #2 rated sunscreen ingredients: titanium dioxide and zinc oxide.

Can you explain why your packaging looks different this year? What is new on the label that we should know about?
The packaging changes were mandated by the U.S. Food and Drug Administration (FDA). The two main features on the packaging that changed were that water-resistance of a product must be given a time frame of effectiveness, either 40 or 80 minutes. The second was that all sunscreens must pass a “broad spectrum” test in order to claim broad spectrum protection on their packaging and also be above an SPF 15. These changes were done so that it would be clearer to consumers what they were purchasing and how it would function as a sun protective product.

Do you have any sunscreen that won’t sting or burn sensitive facial skin?
The most popular product that we offer for sensitive facial skin is the CōTZ Face Natural Skin Tone SPF 40. This product is 100% free of: oils, fragrances, chemical sunscreen filters and parabens. It is also very gentle and goes on smooth as to not irritate. Additionally it is non-comedogenic, so it is great for acne prone skin as well since it will not clog pores.

For the active ingredients, you have a sunscreen with both zinc oxide and titanium dioxide, and then one with just zinc oxide. Why is this?
Zinc oxide has been used for centuries as a healing ingredient in many products so it is considered to be very gentle. It also happens to be the #1 UV filter. We have utilized only this ingredient in our pediatric and sensitive skin products to offer the ultimate in gentle protection for those with the most sensitive skin.

Is there a way to reduce the white residue some zinc based sunscreens leave behind?
Our sunscreens are formulated with micronized zinc oxide, which does not leave a white residue on your skin.

Are your products safe to use on babies/toddlers?
The best product to use on children is our CōTZ Pediatric product, which contains no chemical filters, oils, fragrances, parabens or PABA. This is a great product for children above the age of 6 months.

Why is there tint in some of your sunscreen such as CōTZ Plus SPF 58?
We add iron oxide to some of our products for several reasons. It allows the product to match most skin tones by adding a slight tint. It also acts as another sunscreen filter since iron oxide is another mineral just like titanium dioxide and zinc oxide.

Which is better, spray sunscreens or cream sunscreens?
Spray sunscreens all contain chemical filters and are not entirely effective since you might be using it in a windy environment and not get the appropriate amount of the product on your skin to protect you. Since they also all contain chemical sunscreen filters, they are not ideal for individuals with sensitive skin.

Is there anything else you want to tell us about your products/brand?
At Fallene we are committed to developing the next generation of sunscreen and skincare products to meet the needs of our customers. Keep your eyes out for new products on the horizon!

If you have any further questions about Total Block and CōTZ sunscreen, send us a message on the Coolibar Facebook Page.

Shop CōTZ and Total Block Sunscreen at www.coolibar.com.

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Success Stories Wellness Warriors

Melanoma Survivor Timna

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Timna’s story.

I have been asked by many people about my story as it relates to melanoma, a disease that has changed me from the moment I got the call with my first diagnosis.

Here it is, in brief, with pictures to help…

I was born a baby with fair skin.

I grew up with hippie parents in the late 60s and early 70s. We lived in New Mexico and California, spending a LOT of time outside, dressed in minimal clothing.

I spent my time with my mom in Pacific Palisades, my dad in Venice, and my grandmother (Nonnie) in Marina Del Ray…on the beach.

Sunscreen was not a thing then…at lease that I knew of. It was all about just being outside, in nature.

(I know, weird that hippies let their kids play with toy guns…but they did)

Fast forward (but NOT to forget the 20+ years of sun loving, laying out, skin burning, beach going, roof-top pool visiting, and much more)……

At 38, I was sitting on my bed, studying the bottom of my right foot. Yes, I can see the bottom of my feet. Maybe it’s the yoga, but really I think it’s just my body…because below you will see me, at age 4, eating my foot…..

So, yeah…I was inspecting my right foot and saw a TINY black speck. I actually thought it was a baby tick, and with my fabulous surgical skills, I proceeded to remove the “tick” with a cuticle clipper…GROSS, I know. It was done. The “tick” was out and life went on….until a few weeks later while catching another good look at my foot, I noticed this black speck was back. Somewhere in the back of my head I remembered hearing the words, “If you have a freckle on the bottom of your foot, it is not a good thing.” And I knew I needed to get to my dermatologist ASAP.

I got in as soon as I could, seeing a physicians assistant, who removed the dot and told me to have a good weekend.

Over a week later, a nurse called me. She starts talking to me….about melanoma…my oncologist (I DON’T HAVE AN ONCOLOGIST)…my appointment for blood work and chest x-rays at UNC…surgery…cancer center. I left my body at those words. And when I came back, I told the nurse she needed to stop talking because I was not hearing her, and that I needed to get a pen and paper to write all of this down. This is not real! It’s JUST SKIN! Why x-rays and surgery and new doctors, etc? I mean, it is just about skin, right?

It was then I quickly became an expert on all things melanoma. I knew that when my oncologist LOUDLY stated to me, “THIS IS SERIOUS!” that my life was changing fast and forever.

Fast forward (but NOT to forget the dermatology visits every 3 months with multiple biopsies, most of which coming back severely atypical and needing further excision, the anxiety, fear, post traumatic stress, obsession with checking my moles all day long, 3 months for the hole in my foot to close after the wide excision, and the incision in my groin to heal after the lymph node biopsy, and more fear, and more terror, and, and, and……….oh, and practicing safe sun in all ways)

Three years later (no, I didn’t reach the 5 year mark. so bummed!) I have my second melanoma. This one is on my right forearm, found at one of my regularly scheduled dermatology visits. Back to fear, back to crazy, back to wide excisions.

And then, a few months ago, I started seeing flashes of light in my left eye. So I decide to study my eye ball, something I had never done in the past (surprising!). And sure enough, I see THE TINIEST dark fleck on the white on my eye, and I sink into melanoma fear knowing that tomorrow I will be in my eye doctor’s office no matter how booked and busy she is.

My eye doctor tells me that what I had found were just a few pigmented cells. Well, after you have had melanoma, the words PIGMENTED CELLS don’t jive well, no matter how few there are. She tells me it’s nothing, but that if I want to see an eye tumor specialist because I’m “so anxious”, she would make the call. OF COURSE I WANT HER TO MAKE THE CALL!

After weeks of waiting to get in with the eye tumor guy, and after a FIVE (yes, FIVE) hour appointment of dilation, pictures, exams, different residents, I finally got to see THE specialist, who tells me this: “The reason you came in here today is actually fine, but right next to it is something called Primary Acquired Melanosis, and because of your history with melanoma, we are not going to wait and watch, we need to biopsy it and freeze around the area.”

Um…with shock having taken over, I blurted out, “ARE YOU KIDDING ME?” The thought of a portion of my eye ball being cut and frozen and…It’s all just too much. I break. I break down right there with this nice eye tumor specialist and his nurse. I just sob.

When I went for my 6 week post-op visit I was overflowing with joy to be given the green light on returning to contact lenses. Ready to run out of the office and home to my little, delicate, disk-shaped, polymer wonders that I have missed so much. I was told that I would need to be refitted in my left eye for lenses…because my eye is forever changed.

A new set of eyes? Hmm. Yeah, I can see that. A piece of eye taken out = shape changed forever. And it was then I realize that not only is my eye changed forever, but I am.

And so it is with these experiences, and this new life, that I hope to raise awareness and help to educate others about what might just be something they can hear about rather than experience it firsthand.

As the summer is fast approaching, I am now in planning mode for a 7 week trip to Europe (to include MANY beaches)!  Here is how I do this with melanoma on my mind…I gather up loads of sunscreens, hats, UPF clothing, parasols, etc…and GO.  You can check out my packing list on Respect the Rays!
Wherever you go, you can do it with sun safety in mind!  Whether it’s the pool, the park, the beach, an island, whatever, always practice safe sun!

-Timna
Founder of Respect the Rays

“Out of difficulties grow miracles.”
~Jean De La Bruyere

A special thank you to Jen Jones and Cynthia Hornig of Women You Should Know who introduced us to Timna and her inspirational story of survival.

 

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Avoid UV & Seek Shade SunAWARE

Oregon joins the tanning bed “ban” wagon

On May 9, 2013, lawmakers passed a bill making Oregon the third state, following California and Vermont, to restrict indoor tanning for minors less than 18 years of age. The only exception is if a minor has a doctor’s note allowing him or her to tan for medical purposes.

Sen. Elizabeth Steiner Hayward, D-Portland, said the bill was aimed at reducing melanoma, the most lethal form of skin cancer, which studies show is linked to teen tanning. According to the Centers for Disease Control and Prevention, Oregon women have the highest rate of death from melanoma in the country. “At the end of the day this is about protecting Oregon’s children. Something that we’re all committed to do,” Steiner Hayward said to Oregonian. “When 32 percent of high school girls are using tanning beds, parents aren’t doing their job.”

Tanning beds were also highlighted during Skin Cancer Awareness Month this May as the U.S. Food and Drug Administration (FDA) announced their support of stronger warning labels on tanning beds, including a recommendation that people under the age of 18 abstain from using the devices. The FDA also hopes to reclassify tanning beds and sunlamps from Class 1 (low risk) to Class 2 (moderate risk) devices.

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Success Stories Wellness Warriors

Only Skin Deep

Foundation for Ichthyosis & Related Skin Types® (FIRST) member Cynthia carries a message so full of hope, it transcends the label of ichthyosis—offering inspiration to anyone who is challenged with a physical difference. Ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Cynthia’s belief: relationships, compassion, and her laugh are among the many things that define her. Not her skin. Read Cynthia’s story.

One of the challenges in learning to live with skin that is affected by lamellar ichthyosis has been to develop an understanding that I am not innately a flawed person. Because ichthyosis is so visible, it can feel like a brand of some deeper disorder. But it is not. It is simply a disorder of the skin and probably only a failure of an enzyme or two.

When I was born in 1950, lamellar ichthyosis was poorly understood. I endured many painful experiences. I was hospitalized for a month of treatment trials as an infant. I had all my hair cut off as a third grader to try a treatment on a nearly bare scalp. As a grade-schooler, I was kicked out of a public swimming pool while taking lessons with my neighborhood friends. As a teenager, a hair dresser with whom I had an appointment refused to cut my hair once she saw my scalp.

Nearly everywhere I went people asked “What’s wrong with you? What happened to you? Were you burned?” I remember well the sense of embarrassment and shame that I was different. I assumed that the something wrong with me was way more than skin deep.

Thankfully I was also around people who knew that there was much more to me and to life than my skin. My family, nuclear and extended, my teachers, and others loved me for the normal, complete person that I was and helped me put ichthyosis in its proper place in my life. My healing continued as I got married, had wonderful children, worked in and out of our home, pursued my hobbies and developed a relationship with God through Jesus Christ.

It was God who showed me it’s never too late to have your dreams come true when He brought me my first horse at age 52, satisfying a lifelong longing for a horse of my own. My husband and I cherish our relationships with each other, our sons and their beloveds, our friends, our horse and cats, and other animals we come in contact with. We enjoy physical activity and being out in nature. I also love to sing and to paint in watercolor.

I understand the courage it takes for anyone with a visible difference to leave the house and participate fully in life, and I admire them. A person is interesting when they engage wholeheartedly in activities and relationships that they value. Having a skin condition is irrelevant to most of that.

Recently I was talking with a surgeon a couple days before he was going to operate on my spine. I wanted to alert him to the condition of the skin on my back so he wouldn’t be surprised at the time of the surgery. I was pleased that without thinking too much I said, “The skin on my back is affected with lamellar ichthyosis. You won’t have to do anything special with it during surgery.” To me that’s different than saying “I have ichthyosis,” or “I was born with ichthyosis” or some other way of saying “I’m ashamed of my skin.”

So, it was a triumph, when without a sense of shame, I put ichthyosis in its place, as a condition of my skin. My sense of myself as a valuable person was intact. My interests, my relationships, my compassion, my laugh are among the many things that define me. My skin does not.

-Cynthia

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is invited as a guest blogger and does not endorse or serve as a product representative for Coolibar.

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Success Stories SunAWARE Wellness Warriors

Melanoma Survivor Tim

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Tim’s story.

Like the day my wife and I were married, and the days our children were born, Thursday, August 18, 2011 will forever be burned into my memory. We were on vacation in Maine. My wife, son and I were leaving to sneak in nine holes of golf before the day was over when I got the call from my doctor. He confirmed that the suspicious looking mole on my arm was melanoma. Melanoma, the deadliest form of skin cancer, was on the top of my right forearm. Wow. The prognosis was good, the melanoma was .62mm in depth (generally if the melanoma is thicker than 1mm it is more likely to have spread) and therefore was considered an “early stage” and would require an excision surgery to remove surrounding tissue to check for spreading. I was scheduled for this surgery just five days later and although the surgery showed that all of the melanoma was removed, the pathologist suggested another surgery to obtain the proper margins; 1 cm of clean tissue around the melanoma is required to be removed and be clear of cancerous cells for a pathologist to consider it a clean excision. A month later, I had another excision surgery and this time the margins were met. My doctors determined that with these successful surgeries, no further treatment would be necessary at the time.

The physical healing is progressing well; the mental and emotional healing will take a bit more time. A cancer diagnosis is a very scary. This disease can strike at any time, to anybody without prejudice. It can take your world and turn it upside down. Support of friends and family is critical.

I am currently scheduled for full-skin examinations every three months for the next three years. If I am fortunate enough to not have a re-occurrence of melanoma, then I will move to six month examinations and eventually annual examinations.

My diagnosis not only came as a shock to me, but because melanoma can be hereditary, my family was impacted. They scheduled skin exams since their risk was now elevated. As a result, my older brother recently had a procedure to successfully remove a squamous cell carcinoma, a non-lethal form of skin cancer but alarming just the same. With a new outlook on skin protection for my family and myself, I am very thankful for my early detection and now am focused on keeping us all sun safe. There is an acronym being used now concerning the prevention and detection of skin cancers, SunAWARE. A=avoid unprotected exposure to the sun, W=wear protective clothing and hats, A=apply broad-spectrum sunscreens year-round, R=routinely check for changes in your skin and E=educate yourself and family about sun protection.

I have been working on farms and in the construction industry since I was 13 years old. The days of my youth were as many others, careless and carefree. I was never a lay around in sun kind of person but kind of lived my life with the motto “no shoes, no shirt, no problem”. Always outdoors and rarely protected! Eight years ago, with the passing of my friends father from cancer, a group of friends and I signed up for the Pan Mass Challenge to raise money and awareness for the fight against cancer. This event, which is the most successful cancer fundraiser in the nation, was started by a gentleman named Billy Starr after losing his mother to melanoma back in 1980. It is this event that had brought so much good in my life. It became an annual tradition my whole family took part in. The event was most likely caused the damage to those skin cells on my arm. The top of your forearm is 100% exposed while riding a bike. I am on my bike hundreds of hours a year riding over 2000 miles in preparation and before 2010 was completely unprotected from the sun. I have included a picture with my family form the 2012 ride (pictured above) and for the record; I removed my Coolibar Full Zip Bike Jacket a mile from the finish so I could cross the finish line with my team jersey.

Now, as a 42-year-old father of two and an outdoor enthusiast with activities that take me through all 12 months of the year, the protection of my family and myself has become a daily occurrence. Our leading defense against the suns damaging rays is with UV protective clothing and sun protective lotions for the exposed skin. I am similar to most, once I received my diagnosis I enveloped myself with what melanoma is, every aspect of it’s being and mostly how to prevent a re-occurrence, or in my families case an occurrence! That is how I found Coolibar — my leading defense against re-occurrence. I cannot be found outdoors with out a piece of clothing with that distinct logo on it. My other line of defense is sun protection lotion and I have found another ally in that battle, the Environmental Working Group (EWG). The EWG is the nation’s leading environmental health research and advocacy organization. Their mission is to serve as a watchdog to see that Americans get straight facts, unfiltered and unspun, so we can make healthier choices and enjoy a cleaner environment. I research different products on this site for me and my children, and then can usually find those products on the Coolibar website.

As previously mentioned, my diagnosis has rippled through my family and friends. My brother successfully had squamous cell carcinoma removed and is currently on a yearly check up. My children’s pediatrician is on heightened alert to anything that might be remotely suspicious. Most of my friends have gone to a dermatologist for a skin check and have also increased their protection levels. I am not one to soap box, but when it comes to skin cancer awareness, I will stump all day. So many cancers are not preventable and although melanoma might fall into this category we can all greatly diminish our risk. It is becoming increasingly easier in this country to protect yourself, your friends and loved ones, so why wouldn’t we? Awareness over the last five years has significantly skyrocketed. In 2011 the FDA issued new requirements for over-the-counter sunscreens concerning their labeling with regard to their protection levels, what type of UV protection they offer, the terminology used like “sunblock” and “waterproof”. The ability to be protected is ever-present. My hope is that everyone absorbs as much information as they can and use it to protect themselves and their families.

This year I will be adding another acronym to my list, the ABCDE’s of skin cancer. This acronym is concerning moles on your skin and what to look for: Asymmetry (each of the mole’s halves should be identical. Is the mole flat or raised)
; Border (an irregular border is abnormal)
; Color (dark and/or multiple colors signify a potentially dangerous change)
; Diameter (if the mole is larger than a pencil eraser, it may need evaluation)
; Evolution (a sudden change in the mole can indicate a problem).

Tim

“I’m not a dreamer, and I’m not saying this will initiate any kind of definitive answer or cure to cancer, but I believe in miracles. I have to.” …. Terry Fox, October 1979, in a letter requesting support for his run

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SunAWARE

What is Ichthyosis? The answer may surprise you.

By Maureen Neville
Communications Director
FIRST, Foundation for Ichthyosis and Related Skin Types

When someone discovers that I am the Communications Director for FIRST, the Foundation for Ichthyosis & Related Skin Types®, typically, I am greeted with the same three questions: “What is ichthyosis?”, “Is someone in your family affected?” and…“What brought you to FIRST?” From a clinical perspective, I may respond by saying: ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are very rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Ichthyosis may also severely affect someone’s emotional health and it can lead to a host of other illnesses such as bacterial infection, heat stroke, and immobility.

And, no, I do not know anyone on a personal level that has been affected with ichthyosis.

However, there is more to the story – much more. So what is ichthyosis? It is a genetic skin disorder, yes, but it has also been the catalyst that has lead me on a worldwide journey of meeting the bravest and most inspirational people of my life – a young mother from Illinois, whose baby was born with ichthyosis last December, who has not only accepted her fate of grueling skin care routines, a daily parade of doctors and therapists, and caring for an infant through unprecedented surgeries – but considers it a wondrous blessing; one that she is delighted to share, daily, with the entire world. The young woman from Australia with ichthyosis who has turned her strife into a worldwide “appearance advocacy” effort, changing the way people perceive disability by offering words of empowerment and guidance to all those who “look different” everyday. The teenager from Canada with ichthyosis who only recently shared with us his moment of enlightenment – when he finally realized that because he beat the odds of not “dying by age three,” as doctors had predicted, his life was not a merely ordinary existence, but a destined one. Or, the twenty-year old woman from Arkansas who is the second oldest living individual, with one of the most severe mutations of the disorder – who has not let ichthyosis steal a single moment of her life – and in fact, is now expecting her first child. And of course, the team of medical doctors, stowed away in a clinical laboratory at Yale University, for nearly 31 years, fueled by one and only one thought: finding a cure. Each day, they defy the odds and travel their paths alongside a disorder for which, presently, there is no cure. And they never lose sight that accompanying their every step is hope, support, and the tireless team of advocates at FIRST.

In fact, it is their hope that is the driving force behind mission of FIRST – to educate, inspire, and connect all those affected by ichthyosis. It is their hope that inspires this 31 year-old organization, that has affected so many lives, to be the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis; the only patient advocacy organization funding medical research specifically targeted toward finding advanced treatment as well as a cure, and an organization that has funded 13 projects granting over $1.4 million in research since 2006.

And it is their hope that expands the definition of ichthyosis to the far corners of the human experience – far beyond the diagnosis of a rare genetic disorder.

So what is ichthyosis? It is a message; a call for human compassion; an invitation to experience the authentic awareness of “other.” It is the doorway to unprecedented medical advancements and, most remarkably, it has become an opportunity for worldwide connections…and the chance for global unity.

But the question that is my absolute favorite to answer is this, “What brought you to FIRST?”
If only in these moments I had glamorous, compelling tale of high seas adventure that lead me to their door – but actually, I do not. In truth, the position for Communications Director was actually posted online. The beginning, clearly, is not exactly what you may call riveting. However, as I would not know for several months whether or not the position would be mine, I had the opportunity to discover that this organization was filled with the extraordinary. And what I can also tell you is that I never dreamed, when I was first invited to join the staff, a mere seven weeks ago, having neither friend nor family member affected with ichthyosis – that I would be brought into a community that has felt like the warmest embrace a family could offer.

It is a privilege to work alongside this team of intelligent, passionate and unwavering optimists and I will be eternally grateful for the opportunity to meet all of the unforgettable individuals with ichthyosis; to answer questions about the disorder and to spread the word about our work, our mission and, above all, to raise awareness for this rare disease, so that someday I may be answering the question: When did they find a cure for ichthyosis?

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is invited as a guest blogger and does not endorse or serve as a product representative for Coolibar.

Maureen Neville - FIRST Maureen Neville – FIRST

 

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Success Stories Wellness Warriors

Melanoma Survivor Vanessa

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Vanessa’s story.

I grew up in small town Idaho where life revolved around nature and the Great Outdoors. Any and all free time our family had was spent outside: camping, fishing, hiking, skiing, riding horses, and playing sports. I naturally excelled at athletics, and my family was amazingly supportive as I bounced around from court to court trying out the newest sport that inspired me. But eventually I picked up a volleyball, and it stuck.

Volleyball has guided me through life. I played DI collegiate volleyball, I coached DII collegiate volleyball, and within the last few years, I learned to love a new format of the game that was introduced to me while living on the east coast – beach volleyball. I quickly discovered that beach was a perfect match for my game as it enhances my speed, agility, smarts and well-roundedness on the court. So I threw myself into training and competing against the best beach athletes in the region, and nation. My career yielded great results and in summer 2012. I competed in18 tournaments in seven different states. I was, and am completely addicted to the game, so at the end of the year I decided to further pursue my dream and passion of playing professional beach volleyball at the top level. In January 2013 I relocated to Hermosa Beach, California – the hub of professional beach volleyball in the US – to start a new life. I am happy to be much closer to family, much closer to the mountains, and much closer to the best in beach volleyball athletes where I can train and continue to build upon a new and exciting career.

Summer 2011, I was enjoying a day of waterskiing with my family when my older sister (who is a doctor), noticed a mole on my stomach that she thought looked questionable. For precautionary purposes, she suggested that I have it removed. It was a mole I had seen every day of my life and I hadn’t ever thought twice about it; but trusting my sister’s advice, I agreed to do so. Within the next week we had removed the mole, sent it off to the labs, and returned to our normal lives. At the time, I was living across the nation from my family, so when the lab results came back, I received a phone call from my older sister with startling news – that small mole was in fact melanoma.

I have always been an active, outdoorsy person, and on top of that I am the perfect candidate for skin cancer as a pale, freckled, red head. But I had never in my life gone in for a skin check, and I most certainly did not have a doctor lined up in Washington D.C. where I was living when I received this news. It was a frightening moment, but I had comfort in talking with my sister and together we researched reputable doctors in the area and I was able to get an appointment not too long after.

The first day I visited Dr. Ali Hendi’s office was eye opening. I was alarmed to see the impact melanoma had on so many patients as they came and went from the office. Most of them were decades older than myself, and walked out of the operating room having lost parts of their face, their ears, their nose, and more. It was a huge reality check on how sun exposure adds up over time.

I was informed that my case of melanoma would require Moh’s surgery, which I knew nothing about, but I was quickly acquainted. Moh’s surgery involves cutting out layer upon layer of skin, and testing each layer, until the Doctors determine that they have gone deep enough and the Melanoma is no longer present in that part of the body. Assuming the Melanoma is caught early enough, Moh’s is the final step in removing the skin cancer.

In my first Moh’s appointment, I left with 21 stitches that went two layers deep into my stomach, and a precautionary removal of 2 other moles. But not too long after, I received another phone call with news that one of those moles came back positive with Melanoma as well. So I schedule to have my second round of Moh’s surgery and thankfully this one wasn’t as deep. I was lucky enough to have caught mine early and never had to undergo radiation or further treatments, but I witnessed hundreds of others that weren’t as fortunate as myself, and I immediately made substantial life changes.

I am the perfect candidate for Melanoma – a fair skinned red head. But unlike most red heads, I tan very well. Throughout my life, I’ve been told many times that I am lucky that I get color. But having had this experience, I would argue the opposite. Because I tanned more than your average red-head, growing up, I likely didn’t pay as much attention to sun exposure than most carrot tops that burn like crazy. But I am just as susceptible. In years past, I wore sunscreen if I was outside for long lengths at a time. But I also liked how I looked with a tan. I liked to get color. And like most young females, I went through a stage where I would visit tanning salons.

Since then my life and views on sun protection have taken a 180. My participation on the professional beach volleyball circuit, and my passion for the game, make sun an inevitable factor in my life; however I have made substantial changes to my training routines to ensure I am being as safe as possible. Not only am I paying more attention to my skin, and taking steps to stay protected, but I have also made skin care awareness my main mission for the 2013 season I have coming up. I am thankful to have incredible Sponsors that believe in me as an athlete, believe in me as a person, and believe in my mission as well which falls in line with what they do as well. KINeSYS Performance Sunscreen keeps me protected in the sun. They produce a variety of sun protection products including a Zinc based ointment, spray on sunblock, facial sunblock sticks, and more that I wear religiously. I will be incorporating Coolibar sun protection clothing to my volleyball wardrobe for a physical block. And the Dermatology team of Moy-Fincher-Chipps in the South Bay of California, also encourage me to be as proactive as possible with their medical support. Since my diagnoses, I have had regular skin checks in 3-month increments, and I have had two other pre-cancerous spots removed. I don’t plan on having any more issues with Melanoma and I will do everything I can to keep my skin cancer free, and educate others on what they can do as well.

I still love the outdoors, and I still love beach volleyball, so being in the sun is an inevitable for me. But if I am not willing to compromise time spent outside, then I have to be, and AM more cognizant of how I prepare to do so. I am a freak about sunscreen, I always have protective layers with me, and I wear a hat nearly everywhere I go. I have two substantial scars of my stomach that act as a reminder of what I went through, and what could easily happen again if I am not careful. Those scars not only act as a reminder for myself, but they act as a conversation starter for other beach volleyball players who spend too much time in the sun. Hopefully my stories inspire them to be more proactive as well.

My advice for everyone is get a skin check – even if you are dark skinned, or barely spend any time in the sun, or think you are fine. It is better to be safe than sorry and a quick skin check will give you peace of mind.

Know the characteristics of irregular moles, and pay attention to those that you have. It is too easy to not pay attention, and not all of us have Doctor sisters looking out for us on the ski boat. If something looks funny, or starts to change, see a Doctor immediately. Wear sunscreen, hats, UPF shirts, and be safe. It doesn’t matter what your skin tone, it isn’t worth the risk.

Photo credit: Scott Allison Photography

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