The independent newspaper of the University of Iowa community since 1868

The Daily Iowan

The independent newspaper of the University of Iowa community since 1868

The Daily Iowan

The independent newspaper of the University of Iowa community since 1868

The Daily Iowan

Stead Children’s Hospital holds symposium on rare genetic disorder

The Daily Iowan; Photos by Josep
The Stead Family Children’s Hospital is seen before the Iowa/North Texas game in Kinnick Stadium on Saturday, Sept. 16, 2017. Iowa last played North Texas in 2015 where they defeated them, 62-16. (Joseph Cress/The Daily Iowan)

On Oct. 14, the University of Iowa Stead Family Children’s Hospital held a neurofibromatosis symposium in conjunction with the Children’s Tumor Foundation.

The event took place in the Kinnick Press Box, and participants discussed treatment options for side effects, genetics that cause the condition, and how scoliosis presents itself in the disease. The event allowed patients and families with the condition, along with the general public, to learn more about the genetic disorder as well as a chance to tour the new Children’s Hospital facilities.

The Children’s Hospital has the only comprehensive clinic and pediatric genetics clinic in which to treat the disease in the state. The name refers to three types of genetic disorders: NF1, NF2, and schwannomatosis.

The condition causes the formation of benign or malignant tumors, along with varying effects, including scoliosis, learning disabilities, blindness, and hearing issues. Those with the disease have a one in two chance of passing along the disease to their children.

While neurofibromatosis is a relatively rare condition, affecting 1 in 3,000 people, it occurs more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.

“We have a very diverse team, and [neurofibromatosis] is a very diverse disease in how it presents itself,” said Jessica Sieren, a UI assistant professor of radiology and biomedical engineering.

Because neurofibromatosis manifests itself in different ways on an individual level and its symptoms vary, UI Clinical Assistant Professor of surgery Mark Fisher said, a team approach is needed to provide patients with the most beneficial care.

“It’s an honor to be part of the team,” Fisher said. “I really enjoy taking care of our folks from a surgical standpoint.”

RELATED: Condition causes tumors to grow on Kid Captians’ nerve endings

Fisher, Sieren, and others affiliated with the clinic presented throughout the symposium, discussed various areas of expertise.

The Children’s Hospital Neurofibromatosis Clinic is nationally affiliated, part of the Children’s Tumor Foundation, an organization specifically dedicated to neurofibromatosis research and treatment, allowing for increased research and awareness of the complicated disease.

In January 2016, the UIHC received a multiyear grant from the Children’s Tumor Foundation, in accordance with the Synodos For NF1 program. Researchers on Iowa’s team are collaborating with teams in Arizona, South Dakota, and Minneapolis, using a pig to witness how NF1 symptoms begin to manifest, as well as to improve imaging practices.

The model will also show pathological similarities to how humans react to this disease.

While there is currently no cure for neurofibromatosis, there are many available ways to treat side effects and to increase quality of life with the disease.

“There’s no magic bullet to cure everything,” Fisher said. “But treatment is still possible.”

Some of the treatments discussed throughout the symposium included surgical procedures such as removing neurofibromas (nerve tumors) and spinal alignments, while others involved an increase in genetic testing and imaging to earlier catch the disease.

Neurofibromatosis Clinical Director Pamela Trapane said it is important to be aware of any abnormalities an individual is experiencing in order to monitor symptoms over time and create treatment plans over time.

More to Discover