By Patricia McAdams, Staff Writer, Nevus Outreach
Swooooooosh!! A giant bucket overflowing with countless gallons of water tips over s-l-o-w-l-y, then splashes thunderously onto a maze of colorful water slides and hundreds of kids squealing with delight — including a couple dozen girls and boys in the Nevus Outreach Family.
The weekend gathering at the CoCo Key Indoor Water Resort in Mount Laurel, N.J. attracts three generations of Nevus Families from surrounding states. And while the kiddies have a blast playing in the water, adults hunker down in a dry corner of the room, happily devouring pizza and getting to know one another.
Mark Beckwith, Executive Director of Nevus Outreach, Inc., attending with his daughter Megan, seems to know everyone, and leads the introductions between bites of pizza.
Regional gatherings, phone and online support groups, and the bi-annual conference are all intended to support families affected by large congenital melanocytic nevi (LCMN) and/or neurocutaneous melanocytosis (NCM) and they do it with such a friendly flair.
Kathy Stewart and hubby Mark Beckwith were among the founding families of the group, when their daughter Megan was born with a nevus in 1996. And while their outreach efforts have gone in many different directions, the bi-annual conference remains the cornerstone of everything Nevus Outreach does.
“The conferences are incredible,” says Stewart. “Just being able to walk into a room with other people and you don’t have to explain your nevus, because everyone knows what it is, is remarkable.
“And we always have doctors, so we have the latest information about what they are finding out. Kids get a chance to play with other kids and adults have a chance to be together and it’s fantastic.
“A couple of adults with a nevus have told me how emotional they got, when they first met someone else who had a nevus,” Stewart says.
Rita Pink, for example, had never met anyone with a nevus until she was 61 years old. “Finding and becoming a member of Nevus Outreach has changed my world!” she says. “I am not, and never will be alone again.
“Knowing these people has helped me to be more open about my condition,” she says. “It has enabled me to reach out to help others to accept who they are and to realize they, too, can grow up to be and do anything they want. I’ve been married for almost 40 years, had a 34-year career, and now I can help new nevus parents to realize their kids’ potentials.”
But Nevus Outreach support is especially huge for parents of very young children, says Stewart, remembering back to her pregnancy before their Megan was born. “You go along thinking everything is fine, so when your baby is born with a giant nevus, it’s a real surprise,” she says. “It can be quite shocking.
“It’s frightening, too, because even today there is a lot of misinformation out there about longevity, in particular. Parents often are told, ‘Oh, your baby is going to die.’ It’s not like it used to be, but we still hear it. We really try to educate healthcare professionals, but we have a long way to go apparently.”
To support families, Nevus Outreach began their toll-free hot line almost immediately. They hoped this toll-free line would allow new parents to immediately access accurate information about LCMN and NCM and talk to someone who knew what they were going through. But the hot line exceeded their wildest hopes.
“We met some of the adults with a nevus for the first time on our toll-free number,” says Stewart. “They would call out of curiosity and would be caught by surprise, burst into tears, and say, ‘I thought I was the only one in the world.’"
The telephone hot line continues to be used by many, but Internet online support has evolved into a spectacular tool for sharing information and providing support.
The Nevus Outreach Support Group is like a big round-table discussion that started in 1998 and is as active as ever today with 795 members at last count. This group has made an amazing difference to some families — especially those who are going through various surgical procedures.
For Christine Melton, whose son Joshua was born with a nevus in the spring of 2010, the support she and her family have received from Nevus Outreach has empowered them to take control of a seemingly helpless situation, she says.
“We were overwhelmed by the idea of multiple tissue expansion surgeries, and traveling out of state for these surgeries, and doing the fills on our own,” says Melton, who lives in Arizona and was considering surgery with Dr. Bauer in Chicago. “By providing accurate information and a true understanding of our feelings, everyone fueled the strength we needed to get through this.
“One of the most helpful aspects of the support group is the never ending and timeless base of answers,” Melton adds. “Regardless of the question, someone has an answer for you. And no one is judged by the way they decide to proceed.”
Stewart says there have been unintended consequences of shared story telling, too, which is unexpectedly learning that there are certain complications associated with having a nevus that are shared by a subgroup of individuals.
One complication that had gone unrecognized earlier is vitiligo, a skin pigmentation disorder, characterized by white patches or spots. Another complication is chronic itching. Neither of these affect all people with nevi, but they both affect more people with LCMN than in the general population.
“These patterns that have emerged over time are something that maybe we need to look at medically. They are like a take away message for physicians,” Stewart says.
“So the sharing of this information online is important medically — but emotionally, as well. The online hand holding is remarkable. To me, just knowing that there is someone who cares and knows what your life is like, is the biggest thing. Welcome to our family. That, more than anything else, is what matters.”
Another online support group is Facebook. According to Stewart, Nevus Outreach has been on Facebook for less than two years but already they have more than 700 members.
Rita Pink says that Facebook has helped to bring many people together. She noticed, however, that parents of kids with a nevus have different issues than adults like herself, who have a nevus.
“One night, I just thought it might be useful if we adults could just talk among ourselves, so I established an ‘Adults Only’ page to see if we could be more open and sharing. It has been a big hit. We started with about 42 people and have now expanded to 57.”
As valuable as phone and online support has been to families, nothing quite equals the chance for both adults and kids to meet face to face and see for themselves they are not alone.
For Christine Melton, who attended the 2010 conference, when Joshua was only two months old, the emotional support and information she received changed everything for her family.
“Before the conference, we had scary ideas about what Joshua’s life would be like. But when we were in Dallas, we saw teens and adults with nevi who are well adjusted and even happy to be so unique.
“I made friends at that meeting, who are as close to me now, as friends I’ve had since childhood. I would not be in as good of shape, emotionally, as I am now, without them,” she says. “Nevus Outreach definitely has been like family to me.”
Three hundred fifty one individuals attended the 2010 conference. “Interestingly,” Stewart says, “individuals who had attended these conferences as children are now returning as adults.”
The next Nevus Outreach Conference is scheduled for July 4 - 6, 2012, at the Dallas Marriott Solana Hotel in Westlake, Texas. We hope you can join us at this gathering.