Claire’s Story

No worries, they said. “Kids don’t get melanoma.” They were wrong.

The Melanoma Education Foundation thanks Marianne Banister and the Claire Marie Foundation for sharing Claire’s Story. Recently, the Melanoma Education Foundation and the Claire Marie Foundation began a partnership to dispel the rumor that “Kids don’t get Melanoma.”

By Claire’s Mother, Marianne Banister

In 2011, we considered ourselves a typical a family of four, running here and there, caught up in the dramas of life. Our two beautiful, healthy and happy girls were busily immersed in life. As parents, we were preventative in healthcare. Our girls were screened by a dermatologist annually since the age of two, lived in sunscreen and never tanned. That summer, Claire was a regular 14-year-old, looking forward to her freshman year of high school, her blue eyes sparkling in excitement at all the possibilities. Then we blinked and it all changed.

A mole — one that had been on her ankle since the day she was born — suddenly looked “different.” Its removal was delayed by the plastic surgeon’s office. No worries, they said. “Kids don’t get melanoma.” They were wrong. Nearly four months later the call came: Our darling 14-year-old girl had stage 3a malignant melanoma.

How did this happen? In short, Claire simply became a teenager. Hormonal changes, which routinely occur in puberty, prompted development of melanoma in our daughter; a risk we never knew was possible. More specifically, it turned out elevated levels of TSH linked to her adolescence induced hypothyroid condition was the direct link. Dr. Julie Ellerhorst of University of Texas MD Anderson Cancer Center, who discovered the link between TSH and melanoma,  found Claire’s mole of origin had a very high receptor to the TSH hormone. Dr. Ellerhorst estimated that link thus allowed the elevated levels of TSH to feed melanoma development in our daughter.

Here is the link to Dr. Ellerhorst’s research: https://bit.ly/2SaJLUL

We were blindsided by her diagnosis, yet Claire and the rest of our family accepted no option but success. We were on that celebrated path more than once, only to be diverted by recurrence or metastases of the disease.

For three years, Claire fought hard with a quiet resolve, her sense of humor and joy of life fully intact. She kept her diagnosis private so she could just be a normal teenager as much as possible. Through debilitating treatments, she still managed to maintain her academics, sports, competitive aerobics and design studies. She enjoyed a bounty of friends who often found their way to our home.

The day before she passed away in October of her senior year, Claire learned she was accepted into two colleges to study design, her longtime dream. She was thrilled and still making plans for her future.

Part of Claire’s plan included becoming an advocate to raise awareness of melanoma in young people. As her family, we now champion that cause while celebrating her passion for life and the joy, color and beauty she embraced every day.

Through our CMF Collegiate Ambassador Program, 106 young people are sharing her story and offering awareness prevention through our peer-to-peer melanoma education program on 46 campuses nationwide.

Through our partnership with Johns Hopkins Dermatology we offer professional education to resident dermatologists and pediatricians to help them better understand the nuances of melanoma in adolescents and young adults.

We screen hundreds of young people annually through the CMF Free Skin Screening Program in Maryland, finding atypical moles and melanoma at the earliest stages possible.

We are still a family of four. Claire will always be with us, always our strength and inspiration. We carry out her mission every day by sharing her story and celebrating the amazing young woman we were privileged to call our daughter and sister.

“That will never happen to me.”

By Amanda Carpenter, MEF Ambassador

Like so many teenagers, I sat in the sun for hours slathered in tanning oil. I promised my mother I would wear sunscreen, but my blistering red skin always revealed my lie. To this day, I cringe thinking of what I did back then. I knew better. I knew the risks. As a child, I watched as my grandmother lost a grueling four-year battle with Melanoma.  Like so many teenagers, I thought “That will never happen to me.” But I was wrong. When I was eighteen I noticed a mole on my back that would often become irritated from rubbing on my clothing. I have always been aware to look out for any changes or symptomatic moles due to my family history, which prompted me to have this examined by a dermatologist. I made an appointment and the dermatologist told me not to worry; the mole looked harmless. It looked benign.

There was no reason for a biopsy. But that information didn’t sit well with me. Something was telling me to push my doctor and have the mole removed.  I knew my body and something about this mole just wasn’t right. I knew to look out for anything changing on my skin. I knew I was at higher risk for developing Melanoma because of my family history. I knew I needed this mole biopsied. I pushed, and finally, my dermatologist agreed to take a biopsy.

A few weeks later, I received a call that the biopsy showed Melanoma in situ, which is
Melanoma in its earliest form. I was completely shocked. The surgeon performed a wide local excision to remove it, and my yearly skin checks became even more frequent. The fact that I listened to my body and my instincts and advocated for myself spared me much more invasive treatment, and maybe even saved my life. If I had not gone to see my dermatologist and pushed for the biopsy my Melanoma could have had a very different outcome.

Melanoma can happen to anyone. And even if you never burn, even if you don’t have fair skin and freckles, and even if you are young, it can happen to you. Get a baseline skin check, know your ABCDE’s, and get to know your body and your dermatologist. You are your best advocate.

MEF Evening of Perspectives

The Melanoma Education Foundation would like to thank everyone who braved the inclement weather on Friday, November 9 for our Evening of Perspectives event.  We would especially like to recognize MS Walker, The Brody Family, William and June Braunlich, Mitch and Merrill Applebaum and Steve and Gail Fine for their sponsorship of the event.

In addition to the wonderful food, music and auction, MEF also used this event as a platform to recognize members of the medical and educational community who have demonstrated a commitment to our mission of providing education focused on Melanoma early detection and prevention.  

2018 MELANOMA EDUCATION FOUNDATION HONOREES

C:\Users\jvlassakis\Desktop\Dr. Kvedar.jpg

Dr. Joseph Kvedar

Dr. Joseph Kvedar, our keynote speaker and honoree, is a dermatologist and pioneer in the field of telemedicine. He is the Founder and Vice President of Partners Center for Connected Health, has been a Dermatologist at Massachusetts General Hospital since 1984 and Associate Professor of Dermatology at Harvard Medical School since 2002. He served as President of the American Telemedicine Association, Chairman of the American Academy of Dermatology Task Force on Telemedicine, co-founder and Chairman of the Scientific Advisory Board at Healthrageous, Inc. and serves on the advisory boards of many companies.

He is internationally recognized for his leadership and vision in the field of connected health and has authored over 90 publications on the subject. He established the first physician-to-physician online consultation service in an academic setting, linking patients from around the world with specialists at Harvard-affiliated teaching hospitals.

He is using information technology – cell phones, computers, networked devices and remote health monitoring tools – to create a new model of health care delivery, moving care from the hospital or doctor’s office into the day-to-day lives of patients.   His book, “The New Mobile Age: How Technology Will Extend the Healthspan and Optimize the Lifespan” best summarizes the benefits of his work for all of us.  The topic of Dr. Kvedars speech was “Teledermatology.”

C:\Users\jvlassakis\Desktop\Janda.jpg

Janda Ricci-Munn, Manchester-Essex Regional Middle School

Janda Ricci-Munn is the MEF 2018 Honoree for Excellence in Health Education. He is the health teacher at Manchester-Essex Middle School in Manchester by the Sea, Massachusetts. He began his teaching career there in 2005.
In addition to teaching, Janda owned and operated a triathlon and cycling coaching business while concurrently racing as a triathlete on the national level. After winning two consecutive Ironman 70.3 amateur world championship titles, he left teaching for three years to pursue his dream of professional racing.
He returned to teaching in the fall of 2011, spurred in large part by the loss of his father, long-time Gloucester High School track & field coach, Jim Munn, to melanoma. Janda has been using the MEF melanoma lesson since then and, because of the lesson, a student had an early melanoma removed, 4 others had precancerous moles removed, and Janda’s brother, Corey, had an early melanoma removed.
After students watch the lesson video, he uses the MEF “See Spot bookmarks” as a homework assignment to teach their family members about melanoma. And he took the additional step of providing faculty members with bookmarks. Spanish teacher Kristen Cressey shared with Janda’s class that the See Spot bookmark tipped her off to a suspicious mole on her husband’s back that turned out to be an early melanoma.
Janda resides in Gloucester with his wife and two children.  We congratulate Janda on this prestigious honor!
C:\Users\jvlassakis\Downloads\JenniferLinscottTietgen.jpeg

Jennifer Linscott Tietgen Family Foundation

The Jennifer Linscott Tietgen Family Foundation was established in memory of Jennifer, who lost her life to melanoma in 2002 at the age of 27. The Foundation has been our single most magnanimous supporter for more than 15 years. 

The Impact of MEF Melanoma Lessons

In March, 2017 MEF enlisted volunteer Marissa Picerno, a talented Emerson College Heath Communications graduate student, to develop and administer a health/wellness teacher web survey.  The goal of this survey was to gain insight into how high school students, middle school students, and teachers were impacted by the MEF Melanoma Lessons presented in their schools. Responses were received from 334 teachers.   Here is what we found:

  • 49 teachers were told by students that early melanomas were found because of the lesson.
  • 90.4% of teachers either strongly agreed or agreed that the online melanoma lessons changed their students’ perception of melanoma
  • 73% of teachers reported that students made appointments to get moles checked after receiving the lesson
  • 68% of teachers responded that, due to the MEF lessons, they or a family member and been examined by a dermatologist.
  • After the lessons, 95% of teachers reported students said they would use more sunscreen, and 81% reported students said they would stop using tanning beds.

In addition, teachers provided their opinion about the MEF Melanoma Lessons in their own words.  Check out the word cloud below to see the most hit upon theme.

Visit www.melanomaeducation.net to access our classroom lessons for your students!

The Fairest Kids of All…Need to Do More to Protect Their Skin from Melanoma

Think that it is enough to apply sunscreen for your family beach days, kids soccer games or just doing yard work on the weekend? Think again. While it was previously thought that sunscreen was the key to keeping your skin and children safe from the sun’s powerful rays, it is now clear that a more comprehensive approach to sun safety must be taken and taught to your kids.
In May of 2018, The U.S. Preventive Services Task Force (USPSTF) actually changed their recommendations on when to teach your kids sun safety. The previous suggestion was to begin teaching children about sun safety at age 10. Now, due to the fact that children who get sunburns early in life are more likely to develop melanoma, coupled with the understanding that kids who learn sun
safety early are more apt to stick with it into adulthood, it is recommended that beginning at six months of age parents should be teaching their children about how to protect their skin from the sun.
In order to give your children the tools they need to keep their skin safe, just teaching them to apply sunscreen is no longer enough.  Recently, the National Cancer Institute analyzed over 28,500 responses from the 2015 National Health Interview Survey and, surprisingly, Kasey Morris, who led the study, commented that, “Regular sunscreen use, in the absence of other protective behaviors, was associated with the highest likelihood of sunburn.”
In their paper on the study, they went on to say, “Although participants who did not use sunscreen, seek shade, or wear protective clothing had a higher probability of sunburn (54.8%), the group with highest likelihood of sunburn consisted of those who used only sunscreen (62.4%). The group with the lowest probability of sunburn did not report using sunscreen but reported engaging in the other 3 protective behaviors (24.3%).”
This does not mean that you and your family should shift
from applying sunscreen to just wearing long sleeves and trying to
keep out of the sun. It is crucial to cover all of your bases.
The USPSTF makes the following recommendations for sun
protection of children:
• Wearing protective clothing, including hats
• Receiving proper advice on how to apply broad-spectrum
sunscreen, with a SPF of 15 or more
• Avoiding indoor UV tanning, and tanning beds
• Avoiding sun exposure in the middle of the day, between 10am and
4pm, when the rays are strongest
• Keep your family sun safe this summer!
 
Check out www.skincheck.org for comprehensive information on early self-detection and prevention of melanoma.
 
References
fair-skinned-study-finds-13180
recommendations-extended-young-children-under-10-12752
people-need-more-than-sunscreen-to-avoid-sunburn-
idUSKBN1K02RB
US Preventive Services Task Force. Behavioral Counseling to
Prevent Skin CancerUS Preventive Services Task Force
Recommendation Statement.JAMA. 2018;319(11):1134–1142.
doi:10.1001/jama.2018.1623

Non-Melanoma Black Skin Growths

It is very important to have any suspicious new and pre-existing moles or skin growths checked out by a dermatologist in a timely fashion. However, it’s also important to understand that suspicious-appearing growth often turn out to be either benign, or a lesser form of skin cancer, than the potentially lethal melanoma.

This blog post focuses on 5 different forms of black skin growths that are not melanoma.

Seborrheic Keratosis

While its name may sound frightening, these waxy-textured skin growths are common in people who are middle-aged or older. They most often appear on the head and neck, but they can develop in any are except the palms and soles of the feet.

Seborrheic Keratosis

Blue Nevi

Nevi is just the medical term for the common mole. These most-often benign, isolated moles range from smooth to slightly elevated. They usually develop on the head, neck, back, palms and soles.

Blue Nevi

Black Skin Tags

Skin tags are those annoying (yet perfectly harmless) soft, mushroom-shaped protuberances that are often found on the neck or armpits. Nearly all of them will match your skin’s hue; but some change to black, and a few are black from the very start of development.

If a skin tag turns black, it’s due to a lack of oxygen and it will usually fall off within a week or two. While there are many ways to successfully deal with skin tags, some people have them removed with liquid nitrogen or tie them off with a strand of thread.

                                                    Black Skin Tag

Dermatosis Papulosa Nigra (DPN)

DPN is another quite common condition. It consists of multiple small, benign skin lesions visible on the face that begin most often in puberty, and predominantly affect dark skin-toned individuals.

                                                            DPN

Pigmented Basal Cell Carcinoma (PBCC)

As with Seborrheic Keratosis, Basal Cell Carcinoma sounds much worse than it actually is. It rarely, if ever, metastasizes (spreads to other areas of the body). PBCC can affect both light and dark-skinned individuals.

                                                           PBCC

Please remember (and also let others know) that skin conditions, whether cancerous or not, do not discriminate; they can impact anyone of any skin color. Unfortunately for skin cancer, and positively for us, public education combined with the efforts of medical science will ultimately be its downfall.

The clock is ticking on melanoma; it’s only a matter of time.

*Additional source article credits: American Academy of Dermatology, DermNetNZ, NCBI.gov

Facebook: Melanoma Education Foundation

Twitter: @FindMelanoma

No Clean Pill of Health: A Skin Cancer Scam

In the 19th century, they were called “Snake-Oil Salesmen”; men who traveled from town-to-town pitching useless beverages that they touted as the cure for whatever ails you. They still exist today, except they’re now called “scammers”. And in our contemporary times, they have a wide variety of much more effective tools at their disposal.

Times and technology may have changed; but the practice of morally-divested people trying to scam the public for personal profit has not. Sometimes, despicably, they’re willing to endanger the health of others for money.

Accept No Substitutes

The United States Food & Drug Administration (FDA) has blown the whistle on multiple companies that sell tablets with the promise of protecting those who use them from the effects (including skin cancer and the potentially lethal melanoma) of the sun’s harmful UV rays. The FDA has, thankfully and publicly, lowered the boom on the following companies because their pills offer as much skin protection as eating a Tic Tac would. In other words, they offer none.

“-Advanced Skin Brightening Formula – made by GliSODin Skin Nutrients, of Toronto, Ontario

-Sunsafe Rx – made by Napa Valley Bioscience, of Santa Monica, CA

-Solaricare – made by Pharmacy Direct, Inc., of Dover, DE

-Sunergetic – made by Sunergized LLC, of Woodbury, NY”*

Per the cited source article, FDA Commissioner Scott Gottlieb made his point clearly and concisely with this statement: “There’s no pill or capsule that can replace your sunscreen.” And if there ever is, the FDA will officially let us all know.

Blanket of Insecurity

It’s human nature to believe that, if a product is widely available for sale, it must’ve been approved by some federal agency. But if that were true, you’d never see an (involuntarily) bald man anywhere.

If a person buys a fake watch on a city street, the most it costs him or her is some money lost with a free lesson thrown in. However, to trust your health to a useless medication can cost you your life.

Most people are inherently good, and as such can’t fathom that others might try to profit off risking their health. Unfortunately, those type of people, and companies, are out there. The good news is that today’s tech can work for us, too. Before entrusting your skin’s health (or any other area) to a seemingly magic bean, do some quick online research. Whatever the product, there are sure to be numerous reviews, opinions and/or facts posted about it.

If you’re tanning, either naturally like this person below, artificially (tanning beds), or even out in the sun at all, your best defense is properly applied (and frequently re-applied) sunscreen.

 

 

 

 

Spending a few minutes to verify health claims is the best investment you can possibly make.

*Source article and photo credit: American Council on Science and Health (ACSH.org)

Facebook: Melanoma Education Foundation

Twitter: @FindMelanoma