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Thursday, September 18, 2008

Learn more about Nevus and the Nevus Awareness Quilt

Today's PlainTalk features a guest blogger, Heather Imhoff, Head of Public Information at the Des Plaines Public Library.

Have you ever heard of the term Nevus? I hadn’t when I was contacted by Des Plaines resident Jennifer Schwartz last month about displaying a Nevus awareness quilt here at the library.

Jennifer’s six-year old daughter Michelle is living with a Giant bathing suit trunk Nevus. Nevus (plural nevi) is the medical term for a birthmark. One out of every 50 people is born with a small mole or birthmark, but a “giant nevi” is defined as one over eight inches in diameter. Giant nevi occur in about one in 20,000 births and do not disappear as the child grows older. Giant nevi can present medical challenges. The cause is unknown and the cells that form these large moles on the skin can also appear in the brain and spinal cord and cause neurological problems or even death. The psychological challenges can be equally daunting. Kids (and adults too) with nevi deal with insensitive and even cruel reactions, stares, and finger pointing on a daily basis.

Jennifer and Michelle have received a tremendous amount of information and support from Nevus Outreach, Inc., and want to raise awareness for the group through the Nevus quilt, which is on display in the library’s second floor Youth Services department through October 11, 2008. You can see Michelle with the quilt in the photo up above. The group and quilt were “put together with love by parents who have child afflicted with giant nevus" and the quilt "is intended to travel the country to help make the public aware of this birth defect and also to find a cure”.

Michelle’s mom writes: “Michelle is 6 years old and lives a very active life. She is not slowed down by her Nevus one bit. Michelle has visited a number of doctors over the past six years. She has seen a dermatologist Dr. Mancini of Children’s Memorial Hospital in Chicago every six months up until recently. She has seen pediatric plastic surgeon Dr. Bauer, also at Children’s Memorial Hospital., to see if her Nevus could be removed. But because of the shape of her Nevus, we can not remove it. Which is OK, there is really no reason except cosmetic for it to be removed. By the time she was two, Michelle had had an MRI every six months to monitor any lesions on her brain or spine. She does have a very small lesion on her left temporal lobe, which has gotten smaller over the years and is now being checked once a year. Michelle does not have any lesions on her spine. These lesions can sometimes cause tumors, but in Michelle’s case this is not happening. We brought the Nevus quilt to Des Plaines so that everyone in our community can be aware of this rare form of birthmark.” Here's a picture of Michelle's nevus:

I personally feel it so important for any parent or child facing a challenge to know that they don’t have to face it alone. I myself have a daughter born with congenital developmental dysplasia of the hip (DDH) and know how challenging, both emotionally and physically, it can be to help a child (not to mention yourself!) deal with an affliction that makes them physically “different”. Luckily, my daughter’s dysplasia was able to be corrected through surgery, castings and braces. Throughout, I found tremendous support and practical information via a site and the Yahoo discussion group “hipbaby”. I found it amazing and comforting that I could log onto this group at anytime of the day, ask a question or just vent, and there was always someone there who knew where we were coming from!

(Photo of Heather's daughter in her cast)

So thanks Michelle and Jennifer for sharing your story – and this important information with us! To learn more about Nevus Outreach, Inc., pick up a pamphlet at the library or visit

Want to connect with an online support group? Search for one at Yahoo! Groups,
or Google your area of interest plus the phrase "support group."

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