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Family Faces Challenges of Neurofibromatosis 

The following Healthy Kids column originally appeared in the August 29, 2005, edition of the St. Louis Post-Dispatch.

Inheritable Disease Causes Tumors Throughout the Body

For families of children with life-altering diseases, each day brings new challenges. These obstacles are tripled for the Teeter family of south St. Louis, as Michelle Teeter and two of her three children face a genetic disorder called neurofibromatosis (NF). The Teeters have the more common NF-1; others with a similar disorder have NF-2 (see related item).

People who have neurofibromatosis develop tumors throughout their bodies.  Each child of a parent with NF has a 50 percent chance of inheriting the gene and developing the disorder.

“With NF it’s a crap shoot. My father and brother both had it, and so do I,” Michelle Teeter says. “You know there’s a chance your child will inherit NF, but there’s no way of telling if your child will have a severe case.”

The Teeters’ first child, 13-year-old Amanda, escaped the defect altogether.  Her siblings – Cheyenne, 9, and Justin, 8 – weren’t so lucky.  Cheyenne’s condition has forced five surgeries, including work on her aorta and removal of one of her kidneys. She also has suffered at least three strokes and lost most of the use of the fingers on her left hand, although medication has helped her remain stroke-free since 1999.

Her brother, Justin, has an optic tumor that has been stable so far, but has grown slowly over the past two years and threatens to rob him of his eyesight one day.

“I’ve never had any really major problems, just pain and some major muscle spasms,” Michelle Teeter says. “But it’s been a struggle for our family, especially since Cheyenne has had all her problems.” 

Neurologist Dr. Thomas Geller is one of the doctors who regularly treats Cheyenne and Justin at the multi-disciplinary NF clinic at SSM Cardinal Glennon Children’s Hospital.  The Glennon NF Team follows about 500 patients, in order to learn more about the disorder and treat those who suffer from it.

“The majority of people who have NF have a normal life span, but they can develop tumors as well as neurological, orthopedic and vascular problems,” Geller says. “The families of NF patients often feel like there’s another shoe that’s about to drop. Another set of problems can come up at any time.”

The Teeters have become experts in coping with their family’s medical situation.  Each day, they take Cheyenne’s blood pressure five times and usher her through taking five daily medications that cost a total of $500 a month.

“I’ve always seen all this as a blessing,” Michelle Teeter explains. “You see things completely differently once a doctor tells you your child could die. You realize how important they are in your life and how far you would go to keep them safe. Having a child with special needs is not a burden. I definitely consider us a better family for having gone through all this.”

Michelle Teeter can testify to the difficulties of living with NF.  Most of her life, she has lived with pain.  But she encourages people to ask questions and to steer clear of misconceptions.  “This is not the Elephant Man’s disease and it’s not contagious. Don’t be afraid to approach someone with NF and talk to them about it.”

 

Dr. Bob Wilmott is Chief of Pediatrics at SSM Cardinal Glennon Children’s Hospital and is a Professor of Pediatric Medicine at St. Louis University School of Medicine. If you have a child health question for Dr. Wilmott, go to the “Ask Dr. Bob” section of the Cardinal Glennon Web site at www.cardinalglennon.com.

 

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