First clinic in Arkansas for adults with neurofibromatosis opens
The University of Arkansas for Medical Sciences Winthrop P. Rockefeller Cancer Institute is now accepting patients for the first dedicated clinic in Arkansas for adults living with neurofibromatosis (NF).
NF is a group of genetic diseases that causes typically non-cancerous tumors to grow on nerves. The disease affects 2.5 million people worldwide and currently has no cure, according to a press release from UAMS. There are three types of NF, NF1, NF2, and schwannomatosis. Currently there is only one FDA-approved drug that can treat a subset of NF1 patients.
“As the mutations in these genes cause dysfunction, there is remolding of both the neurons, the nervous system, and a lot of bone,” said Dr. Michael Birrer, director of the Rockefeller Cancer Institute at UAMS.
Adults with NF may face increased risks of cancer, visual or hearing deficits, bone abnormalities, pain, and learning challenges.
“Most NF clinics hang out in children’s hospitals,” Birrer said, “which of course our children’s hospital here has a spectacular neurofibromatosis effort and a great clinic to take care of young people with the disease. That’s in fact the motivation for… establishing the adult clinic.”
Many NF2 or schwannomatosis diagnoses arrive after patients turn 18. When a patient is diagnosed as a child, Birrer said they receive treatment until they become adults. Then, some hospitals have difficulty balancing the care needs of adults and children.
“Three-quarters of NF patients in Arkansas are adults without proper clinical attention,” said Natalie Rockefeller, UAMS Winthrop P. Rockefeller Cancer Institute board member and member of the Arkansas Advisory Board for the Children’s Tumor Foundation, per the UAMS press release.
Birrer says adults living with NF often have to schedule and see a new doctor or specialist for every specific problem the disease causes.
“The healthcare system isn’t always that smooth with having one physician communicate to another physician,” Birrer added.
The new clinic will focus on providing a complex, multidisciplinary approach to care. This includes helping patients with insurance issues, job challenges, disability, and many other health and quality-of-life issues.
The clinic is run by neuro-oncologist Dr. Erika Santos Horta. The clinic is already seeing patients, working in collaboration with Arkansas Children’s Hospital.
“There is a direct conduit now for patients who are being seen in a neurofibromatosis clinic in Children’s, when they get to become 18, then they come over and begin to see Erika,” Birrer explained.
Birrer says this adult clinic will allow researchers to discover more about the origins of the disease, and how to best treat it.