May- Melanoma Month

During this National Melanoma Month of May, you will hear many calls of awareness to prevent skin cancer and melanoma. The Claire Marie Foundation joins in that mission. But when Melanoma stands as the number one cause of death in women 25 to 30 and the number two cancer among adolescents, the time for talk is over.

“The future depends on what you do today.” ― Mahatma Gandhi

The Claire Marie Foundation  is proud to be the first in the nation to offer an afternoon of sun safety education and free head-to-toe dermatological screenings exclusively for young people 21 years and younger.  Dermatologist Dr Eva Simmons-O’Brien, pediatrician Dr. James Fragetta and Maryland Pediatrics Group rounded up a team of renown Maryland dermatologists who donated a Sunday to screen young people.  With the average wait for a dermatology appointment three to five months, our registration and wait-list for the April 24th event quickly filled.

The findings of our screening afternoon were astounding.

  • Atypical moles were found on 20% of the young people seen with biopsy recommended.
  • Some of the nevi were suspicious for melanoma both on clinical exam and with use of a dermoscopy.
  • Of those children with recommended biopsy, 25% had an immediate family member with a history of melanoma.
  • The young people screened were between the ages of 8 and 19 years old.
  • 74% of the young people screened were girls.

Statistically, it should be noted puberty can begin as early as 9 years old. 90% of the cases of adolescent melanoma develop in patients between the ages of 10 and 19 with 55% of the cases in girls and young women due to estrogen factors.

From the time our Claire was diagnosed we saw clearly that melanoma must be detected and removed the earliest possible moment.  We were blind-sided with the diagnosis because she followed all the rules; she wore sunscreen, never tanned and saw a dermatologist annually. What we didn’t know was melanoma can develop in young people due to genetics or hormonal changes during puberty. Despite early detected changes in her mole, we had to wait nearly three months for an appointment to get it removed. We were told “Relax. Kids don’t get melanoma.”  That is when we pledged to open the door to awareness, early detection and treatment.

At the Claire Marie Foundation, we are so proud to empower these families with the ability to detect and stop this disease. Remove the mole,  remove the risk.  If diagnosed with disease, these families can jump into a treatment plan at the earliest possible stage when skin cancers and even melanoma are highly treatable.

“The future depends on what you do today.” Yes it does. Wear sunscreen. Don’t tan. Invest in UPF 50 protective wear. Get screened. Take care of your skin, take care of you and become aware. After all, awareness saves lives.

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Membership In A Most Unfortunate Club

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.” Francis of Assisi

As any parent discovers at one point or another, it is easy to dole out sage advice to our children, but much more difficult to adhere to those words of wisdom ourselves. Over the years, my husband and I reminded our two girls that while they couldn’t always control what life tossed their way, they could certainly control how they responded to the challenge. While in the past that philosophy seemed easy enough to engage, it now is more difficult to embrace thanks to our new membership in a most unfortunate club: Parents of Children Lost to Adolescent Melanoma. It is a club we tried desperately to avoid. It is a club which guarantees life-time membership with no option of cancellation. It is a membership which redefines every aspect of your life and that of your entire family. It is a club which is growing in membership every year.

For those of you who follow the Claire Marie Foundation are well aware, our darling Claire fell to the hormonally induced aspect of this disease. Yup, melanoma is not always about the sun! Hormonal changes during puberty can prompt the development of melanoma. Diagnosed at 14, she bounced back and kept fighting to live a vibrant teenaged existence until the beast returned to claim her at 17 years old. We are determined to find some good out of this nightmare as Claire did every day. If that means waving my club membership about, I will. The mission of the Claire Marie Foundation is to raise awareness, clarity and hope in the fight against adolescent melanoma while celebrating the joy, color and beauty Claire embraced every day. In short, at the Claire Marie Foundation, we want nothing more than to limit membership in this unfortunate club and that begins with awareness, education and early screenings. As a foundation, we personally can’t find a cure to melanoma, but we can wave the warning flag and help others create a path to early detection. As part of recommended healthcare, we screen for breast cancer, prostate cancer,ovarian cancer, even dental and eye problems. Shouldn’t we routinely screen our skin? After all, it is the only cancer than can be seen with the human eye on the largest organ in our body. If a pre-cancerous or a-typical mole is discovered early and removed before it becomes malignant, membership in this club could go way down! Have we not learned anything from the success of breast cancer and other cancer screenings?

I recently joined other unfortunate club members and scientists the Melanoma Research Alliance forum in Washington D.C. It was an impressive gathering. I was astounded at the remarkable level of world-class scientific leaders who were present to share information and listen to stories from the “trenches”; tales from patients and non-profit advocates alike. They are compassionate, dedicated medical warriors committed to treating and curing this disease and thank goodness for them! I just wish the medical world would put as much effort toward prevention and detection as they do looking for a cure. We know melanoma is one of the most aggressive and deadly cancers. Early detection is essential to survival. Yet, the mention of the need for routine skin screening seems to bring about the awkward sound of crickets in the room. There was an extensive study presented during one session that validated the positive consequences of screening. Think about that for a moment. A study? Really? We need expensive studies to tell us screening and removing the risk of disease is a good idea? Isn’t that what we call common sense?

Here is the bottom line; the medical system is not currently set up to support early screenings for skin cancer and melanoma. There is, on the average, a three to five month wait for an appointment with a dermatologist or plastic surgeon; partly because there is such a great demand for cosmetic procedures. Pediatricians and general practitioners are not always trained in dermatology which often leads to misdiagnosis. Then there is the insurance industry which often considers dermatology a specialty rather than a necessity. And we wonder why melanoma is the fastest growing cancer world-wide.

Next month, the Claire Marie Foundation will hold it’s first free skin screening for young people. In the days to come the details and registration will be posted on our website and our social media. Following the words of St.Francis, we feel it is necessary, and possible and if we are lucky, it will lead to the impossible. Claire would like that.

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