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Don’t Get Blindsided! Your Thyroid and Melanoma

It was the perfect storm. When Claire was diagnosed with cutaneous melanoma at the age of 14, it absolutely blindsided us. She wore sunscreen, never tanned and got annual skin screenings. What was missed was the risk associated with hypothyroidism; a condition that can occur as a result of puberty. Claire became fully symptomatic at the age of 14; a diagnosis coinciding with drastic and quick changes in a mole that had always been prettily sitting on her ankle. A research oncologist determined the two factors meshed to create her melanoma.  Yup. The perfect storm. With that, we first learned factors other than UV sun exposure can cause melanoma in young people and fueled what is now our mission at the Claire Marie Foundation. 

Let’s break it down further. People with hypothyroidism have unhealthy high levels of thyroid stimulation hormone or TSH. Some individuals can have moles or skin lesions with receptors to TSH. When those receptors bind with TSH,  it can result in stimulated melanoma cell development. In short, the higher the TSH level, the more “food” for melanoma growth.  Here is the research report from Dr. Julie Ellerhorst of MD Anderson Cancer Center who determined the link in Claire’s case, and other research through the National Institutes of Health https://bit.ly/46Oopighttps://bit.ly/3MjDy2K

Once we knew the catalyst in  Claire’s diagnosis, we closely monitored her TSH levels as part of her treatment plan, keeping her levels as low as possible through medication in addition to melanoma drug therapies. Every time her TSH level would start to rise, another mole would begin to change, become atypical and need to be removed. Frustrating? Absolutely.  But Claire accepted it as a manageable chronic condition. ” Everybody’s got something” she would say before running out the door. Little did we know. 

What does this mean to you? If you or a family member has hypothyroidism or have a history of melanoma, make sure you get a full body dermatoscope based skin screening – head to toe. Remember, melanoma can develop in areas of the body where the sun does not shine and can often be colorless! And of course, talk to your doctor.  Getting a reading on your thyroid is as easy as a blood test. 

Keep in mind that melanoma is more aggressive and invasive in adolescents and young adults and if related, can be further accelerated by TSH. Should anything look questionable, see your dermatologist right away.  If you follow our other articles, you will remember surges in testosterone and estrogen can also be contributing factors to the development of melanoma in young people along with genetic predisposition. Add to that the risk of UV sun damage and you can see the need for overall skin care. Don’t get blindsided. Take care of you and your skin. Remember; prevention is the cure when it comes to melanoma. #livelifelikeclaire

 

 

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A Young Melanoma Survivor’s Nightmare: Why It Often Comes Back

There is still more evidence proving the shadow of a melanoma diagnosis never really leaves a young person. The “Beast” can and does often rear its ugly head at least once more in a survivors lifetime.

Dermatologists at the University of Missouri – Kansas City School of Medicine, have just released a new study which finds patients who have survived cutaneous melanoma, especially those diagnosed in childhood, adolescent and young adulthood, are five times more likely to develop a secondary primary cancer. It is of special concern within the first year of diagnosis. 

The greatest risk is for infants; those diagnosed with melanoma before they enjoy their first  birthday cake.  The risk declines with maturity through adolescents and teens with the lowest risk among those diagnosed between the ages of 25 and 29.  However it’s important to note these survivors in young adulthood are the most susceptible to developing internal cancers.

One of the researchers, Dr. Yen Luu, M.D. says “while the incidence of primary cutaneous melanoma (CM) in children is declining and the five year survival rate is relatively high (87% – 95%), secondary cancers (SPC’s) occur in over 11% of cases, reducing overall survival outcomes.”

All this supports the need for regular follow-up, self checks and routine dermatological skin exams for melanoma survivors. At the Claire Marie Foundation we believe prevention is the cure. Educate yourself. Know your risks. Engage in sun safe practices and book annual full body skin screenings with a dermatologist. Remember, primary care physicians and pediatricians are not trained to detect melanoma and other skin cancers.  Take care of your skin. Take care of you and be aware. After all, awareness saves lives. 

You can read the full report here: https://bit.ly/45O4P4u

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Air Travel and Melanoma; Know Your Risk!

Summer is finally here and it’s time to pack the bags and take off to a new adventure!  There’s so much on our mind when it comes to airline travel these days with cancelled flights, delays or lost luggage we want to offer this reminder; don’t forget to apply sunscreen before you board!

Research in the Journal of American Medical Association https://bit.ly/3WYcbzD  found airline passengers as well as  flight crews are exposed to an extreme amount of damaging UV  while in the air.  In fact, it’s so intense the study found one hour in flight equals 20 minutes in a tanning booth. Keep in mind one visit to a tanning booth can increase your risk of developing melanoma by 75%.

The risk is not limited to those just in window seats as the rays flood the entire cabin. Obviously avoiding a window seat and or lowering the shade can help  reduce exposure but to be safe, apply sunscreen prior to your flight and reapply every two hours. Wearing UPF 50 clothing helps as well! And don’t forget the little ones! Window seats are the favorite for them! Keep the sunscreen handy and close the shade as soon as possible.

Most importantly, have a terrific trip! Stay safe! #livelifelikeclaire

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Enough Already! It Takes More Than Sunscreen to Beat Melanoma

As we wrap up melanoma awareness month this May with sunshine filled plans for the summer ahead, can we please, PLEASE stop with all the half truths and mis-information about the causes and prevention of melanoma?

Can we address how it’s NOT only due to UV exposure? How prevention requires much more than sunscreen? Can we please, PLEASE address its prevalence in adolescents and especially young adults? Can step beyond the obvious and dive into reality?

Perhaps it’s the journalist in me who believes in hard, cold facts.  Perhaps it’s my lot as a grieving, ticked-off parent and melanoma prevention advocate but I have had it!   Through social media, news coverage and advertising every May we are continually inundated with one prevention message; slather on the sunscreen and melanoma won’t find you. Actually, nothing is further from the truth! While exposure to the sun’s UVA/UVB rays is the MOST common cause of skin cancers and melanoma, it is NOT  the ONLY cause. 

Did you know genetics and hormonal changes related to hypothyroidism, pregnancy and puberty can prompt development of melanoma?  Should you draw the unlucky gene or hormonal card, all the sunscreen in the world won’t stop the beast; but routine skin screenings can. If a problematic mole is removed at the very earliest stages there is a 98% chance of surviving past five years. But as the Melanoma Research Alliance reports should the melanoma reach a higher stage and spread internally through the body, the five year survival rate drops to less than 25%

Last I checked, all humans have skin. I’d say that’s well worth 15 minutes in a paper gown.

The Skin Cancer Foundation reports skin cancer is the most common cancer worldwide. It is also one of the most treatable cancers if it is detected early.  So why is there such an orchestrated pushback against routine skin screenings in the United States whereas in countries such as Australia and New Zealand it is as routine as a dental appointment? 

Perhaps because in the U.S., melanoma is not given its due among serious cancers.

Consider recommendations from the U.S. Preventive Services Task Force which every Spring, releases a report on the effectiveness and need of skin screenings for melanoma and other skin cancers. It’s important to note, the USPSTF, according to their website, is a collection of “16 nationally recognized experts in prevention, evidence-based medicine, and primary care. Their fields of practice and expertise include behavioral health, family medicine, geriatrics, internal medicine, pediatrics, obstetrics and gynecology, and nursing.”  Note not one is a dermatologist. Not one. Additionally, physicians in primary care and these other specialties are not exposed to dermatology as part of routine medical training. Why does that matter? Because dermatologists are the only medical professionals trained in the early detection of melanoma and other skin cancers. 

Last month, the USPSTF reinforced its earlier statement from 2016 finding inconclusive evidence as to whether or not skin screenings for those “without signs or symptoms” are effective for reducing complications or death from skin cancers or melanoma in adolescents and adults. The report concluded it was a wash; screenings could work or they could not.  Without symptoms? Really? Let’s look at this a little closer. By the time those “signs or symptoms” are noticed by the naked eye of a patient, if even noticed at all, it most likely is a problem. Add to that a 3-4 month wait for an evaluation and biopsy and a patient could be looking at a full blown case of melanoma with risk of metastasis to other organs.  If the same mole is detected in a routine screening, by a dermatologist trained in dermoscopy, the changes could be detected at the very earliest stage when it is 98% treatable, long before it has spread into the body. Yes, the patient will have a biopsy scar, but most likely no additional surgeries, drug therapies or negative impact on their life.

Even more mind-blowing is that in 2022, the USPSTF found melanoma was “over-diagnosed”. Let’s think for just a moment about that statement. How is a cancer over-diagnosed? Either you’ve got it or you don’t! The argument in that report was primary care physicians found while more patients were being diagnosed with early stage melanoma through routine screenings, fewer were dying of the disease. And that’s a problem? Isn’t survival something to cheer about? Did the USPSTF apply the same argument to preventive colon cancer, breast cancer or prostate cancer screenings which are much more invasive and costly? Of course not! It supports routine screening for these cancers because without question early detection of polyps, atypical moles and tumors is essential to beating all cancers.

These statements from the USPSTF complicates an already muddled message in melanoma prevention and adds to a broken system which claims lives daily such as that of my 17 year old daughter Claire Wagonhurst.

Our Claire was a beautiful 14 year old athlete and artist just beginning high school when we noticed unusual changes to a mole. She was sun safe and had been screened six months earlier by a dermatologist, but this was something new.  Despite our urgency to have the changing mole removed we faced a three month wait with the promise that “kids don’t get melanoma”. Surprise! Yes they do! Because melanomas are more aggressive and invasive in young people, it had quickly surged to stage 3a at removal.  We were blindsided even more so when we learned Claire’s melanoma had nothing to do with the sun. 

Ultimately, Claire was diagnosed with adolescent melanoma. The short version is this; hormonal changes related to puberty caused her melanoma. The longer version; routine hormonal changes in puberty prompted the development of hypothyroidism in her body which produced excess levels of TSH hormone. Add to that she had an extreme TSH hormone receptor in a mole that had been on her ankle since birth. A research oncologist at MD Anderson found that in Claire’s case, the two components meshed to develop melanoma. Subsequently during the course of her diagnosis, every time her TSH levels became elevated, another mole would be found to be rapidly changing and need to be removed. The best preventive treatment;  routine screenings every 3 months to remove any atypical moles before melanoma could set in in addition to ongoing sun safe practices.  We just accepted it as a chronic condition of her life. Sadly, it became much, much more. 

While living a full teenaged existence, Claire waged a three year battle of surgeries, hospitalized drug therapies and recovery therapies against what turned out to be an ultimate death sentence. All her pain, anxiety and loss would have been negated had the mole simply been biopsied and removed months earlier as we requested. If the medical profession had been fully educated about melanoma in young people. If, If, If!  The system failed our darling daughter and she isn’t alone.

The Skin Cancer Foundation reports melanoma is the most common cancer in young adults under 30,  the most common cause of cancer death in young women 25-30 years and the second most common cancer in adolescents 13 to 19 years. 

Melanoma in young people is said to be at “epidemic” proportions with diagnosis up 253% in the last 40 years.  Additionally, young people do not get the more treatable basal cell or squamous cell skin cancers;  they only get the nasty, deadly variety; melanoma.

At the Claire Marie Foundation, we share awareness information, prevention education and host free skin screening events for adolescents in young adults in Maryland and South Carolina. Since 2016, we have screened 1,440 young people 13-29 years, finding 16% needed biopsy for suspicion of melanoma. In many cases, early stage melanomas were detected, zapped before further treatment was needed.  So please, do not tell me routine skin screenings do not save lives. I’ve witnessed the victories and I have suffered the loss.

So how about this? Instead of ignoring the need for screenings due to lack of access,  let’s fix our broken system.  We need general practitioners such as those in the  USPSTF to follow the lead of other nations by including dermatology in their training and become skilled in the screening process of dermascopy.  By joining dermatologists in this expertise entirely new pathways to screenings and early detection would be created. Getting a skin screening could become as easy as a visit to the dentist. Wouldn’t that be amazing?

  Remember, if you’ve got skin, you could get melanoma. Know all the facts and take every precaution. That life you save could be your own or someone you love. #livelifelikeclaire

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More Evidence of Why Melanoma Is of Special Risk to Young People

You’ve heard us share the statistics again and again; melanoma is one of the most common cancers in adolescents and young adults – or AYA’s as they are called. Now new research reinforces why early detection is more critical than ever.                                      

For any human, the key to beating melanoma is detection at the very earliest stage before it has spread. But researchers at the Keck School of Medicine at the University of Southern California determined it is especially crucial when it comes to AYA patients. When found early, adolescents and young adults have a much better chance of surviving melanoma than older adults. But when melanoma has advanced to stage IV, when it is metastatic and has spread through the body, young people have only a 20% chance of surviving melanoma; a much worse rate than adults over the age of 40.

The lead researcher on the project is Dr. Katherine Y. Wojcik. Since the majority of melanoma research is focused on those over the age of 65, Dr. Wojcik felt the need to dive into the realities of the adolescent and young adult populations. ( can we just say a huge THANK YOU for that?!) According to Wojcik, “Advanced melanoma has poor survival, particularly  in AYA’s , yet information on the contributing factors remains scarce, lacking the level of detail readily available for older adult patients”. 

An earlier study by Johns Hopkins researchers found that melanoma is more aggressive and more invasive in young people than older adults. http://bit.ly/37HGxyH

Considering both these studies, with increased rates of diagnosis, it reinforces our belief that prevention through routine skin screening, along with other prevention methods, is a much better solution.

“To improve AYA survival, early melanoma detection is critical, Dr. Wojcik says. “Greater awareness, suspicion and screening for AYA melanoma may disrupt delays in diagnosis and reduce the excess burden of mortality from stage IV melanoma in young people.” http://bit.ly/3XW25ys

We couldn’t agree more. That’s why at the Claire Marie Foundation we continue to shine a light on preventing melanoma in adolescents and young adults through awareness, education and prevention. We are especially proud of our free melanoma skin screening program which has found 16% of the nearly 1,400 young people screened by our dermatological partners, needed biopsy for suspicion of melanoma.  As we say – #preventionisthecure.

#adolescentmelanoma #youngadultmelanoma #sunsafe #skinlove #skinscreenings #cancerprevention #ayacancer #ayamelanoma

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Melanoma: Why The Department of Defense Thinks It’s Worth $40 Million in Fiscal 2022.

They put their lives at risk to defend our nation and trust the U.S. Government will provide for their health and well being along the way.  As we honor Veterans and those currently serving in our Military, let’s take a moment to consider an unexpected risk they did not sign up for; death from melanoma and other skin cancers. 

Melanoma diagnosis is on the rise both among veterans and in active duty service personnel. The numbers are especially high among young people currently serving in the Navy, Marines and Air Force. Those who serve as pilots have the highest rate of diagnosis. 

It’s such a problem that the U.S. Department of Defense has targeted and directed 40 million dollars to melanoma research for Fiscal Year 2022.  Why is military personnel, both past and present, at an accelerated for melanoma? Consider this:

Active military are exposed to extensive and dangerous levels of UV radiation while flying in the air, deployed on ships and assigned to remote harsh environments such as deserts. Sunscreen and UPF 50 clothing are not routinely available nor are annual skin screenings through trained dermatologists.  Add to that years in service, and it is no surprise that so much money needs to be poured into treating melanoma and other skin cancers among our military. 

Here’s a thought; wouldn’t melanoma prevention be a better solution; both in terms of life and economics?  After all, melanoma is one of the most preventable of cancers. 

Prevention is as simple as establishing sun safe education training, providing and distributing ample amounts of sunscreen, incorporating the use of UPF 50 materials in U.S. Military uniforms and off duty attire, and most importantly making routine dermatological skin screenings part of annual military health checks. 

The brave men and women defending our country have enough to worry about. Let’s take melanoma and skin cancers off their plate. 

Interested in learning more? Here’s some insight. 

https://www.skincancer.org/blog/skin-cancer-risk-military/

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Claire Marie Foundation Takes NYC!

 

Bright Lights! Big City! On August 17th, CMF lit up Times Square in New York City with plenty of Claire Coral! The Claire Marie Foundation was one of a handful of nonprofits featured in Times Square as part of  National NonProfit Day! Our :15 second commercial ran 100 times in 6 hours – with 1.5 million impressions and thousands of people reached! That doesn’t even count our social media impact!

 Raising awareness of adolescent and young adult melanoma with the knowledge it can be prevented is the heart of CMF’s mission. We can’t imagine a better way to do it! Co-Founder CEO and Claire’s Mom, Marianne Banister, was joined in the big reveal by Claire Marie Board Members, Jaqueline Smith and Julianne Kavoussi as well as Young Professional Ambassadors Sarah Emrich, Becky Kavoussi and Collegiate Ambassadors Molly Sharpe and Anna Sharpe.

The event was especially meaningful for Claire’s mom.  Claire would be SO excited!  She absolutely loved the energy and excitement of New York!  She had so many happy adventures while visiting the city with her sister Hillary and friends. We can only imagine how excited she would be to see the impact of her legacy in Times Square – spreading so much awareness  and hope in the fight against adolescent and young adult melanoma.”

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Screening To Save Your Life! How To Find the Best Dermatologist

We cannot say it enough! Make sure you are screened annually for melanoma and other skin cancers. It is essential to nip melanoma in the bud, halting its ability to move through your body and threaten your life. But who does the screening and how they screen can make all the difference.  Here’s some tips to keep in mind!

Rule #1: Skip Your Primary Care Physician

Surprise! Pediatricians and General Practitioners do not routinely study dermatology in their medical preparation. That means they are not trained to detect skin cancer and melanoma at its earliest point of origin. The result; melanoma is often overlooked or misdiagnosed at the earliest stage when it is most highly treatable – especially in young people.

Rule #2: Find the Right Dermatologist

Before you book your neighbor’s favorite dermatologist, listen to this: not all dermatologists are equally trained nor have equal focus. Some specialize more in the aesthetic and cosmetic care of the skin. Others offer greater attention to the disease aspects of the skin. Then there are those who are equally balanced in both specialties. Do your homework before making an appointment. Sometimes you can get faster access by booking a screening with a Dermatological Physicians Assistant who has been trained specifically in dermoscopy to screen for melanoma. It’s all a matter of a dermatologists training, focus and expertise – and your ability to find the right person for you.

Rule #3: Advocate For Yourself!

Ask a few questions and make sure you are scheduling an appointment with a dermatologist who meets the Gold Standard of skin screening. This is no time to be shy! You should ask about their screening procedures and expect the following:

  • The dermatologist will put you into a gown and do a full body check for moles and any lesions. That includes the feet, nails, head and genital areas. If a dermatologist suggests you don’t need a full body screening because you are “too young for melanoma”- find a new dermatologist
  • Make sure the dermatologist uses dermoscopy. It is a screening technique that uses skin surface microscopy. It can also be called epiluminoscopy and epiluminescent microscopy. It allows the dermatologist to look into the layers, color patterns and changes deep within the mole, rather than just glancing at the surface.  If a dermatologist wants to evaluate your moles with only their naked eye rather than use a dermatoscope – find a new dermatologist.

Rule #4: What If Something Is Found On My Skin?

Finding an atypical or precancerous mole doesn’t mean you have melanoma. But, it does mean something is changing on a cellular level. Since melanoma in adolescents and young adults is more aggressive and more invasive than in the older adult population – it should always be considered a victory to have an atypical mole removed and evaluated before it can evolve further. Remember: Remove the mole – Remove the risk. 

  • If a mole is found to be questionable, the dermatologist will determine if it should be removed for biopsy or if it should be watched. The appropriate time period for “watching” is three months.  You should also keep a close eye on the mole in question and look for any other changes in your skin. Don’t hesitate to call if something evolves and changes before the scheduled follow-up appointment. And keep that appointment!
  • Many dermatologists will photograph moles they want to keep an eye on to best detect any change. Still others may recommend “mole-mapping” technology in families at high risk for the disease. This involves full body photography. 

So in answer to your question – who do I call? Here’s a few names for those in the Mid-Atlantic area and South Carolina. 

Listed below are the amazing ‘Gold Standard” dermatologists who dedicate their time and expertise to the Claire Marie Free Screening Program and meet the highest standards of care.  All are listed in alphabetical order in the two cities we serve as of Fall 2022.   Many are part of the renown teams at Johns Hopkins Dermatology, Simmons-O’Brien & Orlinsky, Belcara Health,  Germain Dermatology, Maryland Dermatology, Skin & Vein, SCSPhysicians, Mercy Medical Center or University of Maryland Upper Chesapeake Hospital. Others are in Private Practice, and extremely attentive to their patient’s care. We are honored, privileged and so very grateful to have them join us in our mission to save young lives. 

Baltimore, Maryland

  • Dr. Melanie Adams, M.D
  • Dr. Karen Beasley, M.D., F.A.A.D
  • Dr. Nicola Bravo, M.D.
  • Dr. Sarah Cannon, M.D.
  • Dr. Bernard Cohen, M.D. 
  • Dr. Sherry Cohen, M.D.
  • Dr. Jennifer Cooper, M.D.
  • Dr. Meg Gerstenblith, M.D.
  • Dr. Anna Grossberg, M.D.
  • Dr. Christian Halvorsen, M.D.
  • Dr. Sarah Hsu, M.D.
  • Dr. Dennis Kurgansky, M.D.
  • Dr. Onah Lauring, M.D.
  • Dr. Mark Lowitt, M.D.
  • Dr. Vadim Gushchin, M.D.
  • Dr. Stanley Miller, M.D.
  • Dr. Diane Orlinsky, M.D. F.A.A.D
  • Dr. Rachel Schleicher, M.D.
  • Dr. Amie Sessa, M.D.
  • Dr. Eva Simmons – O’Brien, M.D., F.A.A.D
  • Dr. Saif Syed, M.D.
  • Dr. Zain Syed, M.D.
  • Dr. Samantha Vincent, M.D.
  • Dr. Margaret Weiss, M.D., F.A.A.D.
  • Dr. Robert Weiss, M.D., F.A.A.D
  • Dr. Sean Wu, M.D.

Charleston, S.C. 

Germain Dermatology

  • Dr. Marguerite Germain, M.D.
  • Dr.Joshua Black, M.D.
  • Louisa Floyd, PA-C
  • Dr. Emily Kmetz, M.D.
  • Lainey O’Donnell, PA-C
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Congratulations to the 2022 Recipient of the Claire Marie Foundation Scholarship in Arts & Design

Congratulations to Brigitte Gendron, the 2022 Recipient of the Claire Marie Scholarship in Arts & Design!

The Notre Dame Preparatory Senior will begin her design studies at Fordham this Fall! Once she gets unpacked and settled, Brigitte is excited to immerse herself in the study of Visual and Concept Arts.  Her dream is to channel all her passion and love of design into a career in the entertainment industry;  in film, television or game design. 

 Every year since 2015, the $5,000 award is given to a graduating senior from Claire’s alma mater, Notre Dame Preparatory School in Towson Maryland to support the recipient’s desire to study design arts in college. It was a dream of Claire’s to launch a career in interior design and we are thrilled to see other young women share the same passion and excitement. Each year, our winners are selected by an exquisite team of esteemed design professionals from across the country! They bring expertise in fine arts, theatrical, animation, interiors, fashion, photography and film. Our thanks to our CMF Scholarship Committee: Katie Fico with Walt Disney Animation Studio, Los Angeles based Interior Designer Stacey Vuduris, Theatrical Designer Timothy Swiss of Los Angeles, Photographer Susannah Dowell of Colorado, Muralist and Freelance Artist Katherine Boggs of Atlanta and Couture Designer Ella Pritsker of Maryland.

Brigitte joins past recipients who have studied in Claire’s memory at University of Ohio at Miami, University of Southern California, Rollins College, University of Virginia ,Savannah College of Arts & Design and University of Maryland Baltimore County. 

Brigitte, all the best in your academic and professional adventures! We can’t wait to see the magic you create to brighten the world!

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Heads Up! Before You Pop a Cool One – Alcohol and Risk of Melanoma

Well, here’s a surprise!

Be careful of what you pull from that icy cooler to quench your summer thirst! New research indicates that drinking alcohol can actually make your skin burn in the sun more quickly and more severely! And it’s not just because imbibing may distract you from reapplying sunscreen as often as needed! The alcohol changes your skin on the cellular level, lowering levels of carotenoids and deregulating your immune system.  Dermatologist Dr. Niyati Sharma explains the German study. “One standard drink increases your risk of melanoma by about 20%. If you drink five beers the risk goes up by 55%”.

All this is even more reason to be smart in the sun! Pay attention to the basics! Reapply sunscreen – a shot glass size of liquid sunscreen every two hours, wear UPF50 clothing to offer added protection and get an annual skin screening! Plus – keep an eye out for any unusual changes. 

Here’s a look at the entire article! https://bit.ly/3Pb3Mo4

Above all else – be smart and safe when it comes to both the sun and alcohol! Have a terrific summer!

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