LITTLE ROCK, Ark – UAMS announced the opening of an adult neurofibromatosis clinic, fully dedicated to the care of adults with neurofibromatosis (NF) at the UAMS Winthrop P. Rockefeller Cancer Institute.
This type of clinic is the first to be funded with half a million dollars by the Children’s Tumor Foundation.
UAMS said that NF is a group of rare genetic disorders that cause tumors to grow on nerves throughout the body, affecting 2.5. Million people worldwide.
Kathleen and Ron Sullivan said this clinic answered their prayers.
“Having this clinic where we can get one doctor who is going to coordinate it all and is going to take care of the whole body is an amazing gift,” Mrs. Sullivan said.
Mr. Sullivan said this clinic is a huge deal for him and his family since he was diagnosed with the disease in 1998 following a misdiagnosis.
“I have had several MRI’s done but they were never done at the same place,” Mr. Sullivan said.
He said this clinic is a long time coming.
“This has been a dream come true I finally get the care that I need coming to this clinic,” Mr. Sullivan said.
“There is a sense of calm now because it’s not just him, I have gone through this with him and both our sons who have NF,” Mrs. Sullivan said.
The Children’s Tumor Foundation granted the clinic $500,000. UAMS says the clinic will be staffed with specialists who can address the complex medical needs of patients with NF as they navigate adulthood.
Michelle Przypyszny, Chief Advancement Officer for the Foundation, said that once patients with NF reach 18 years old, they age out of their hospital, because of this some patients stop getting treatment.
“That could mean that for 12,15, to 20 years that might not see anyone for their NF and NF needs to be treated and followed regularly,” Przypyszny said.
Although there’s no cure for NF, Przypyszny said the clinic plans to manage the disease.
“It causes deafness, blindness, learning disabilities, disfigurement, 20 percent of our population ends up with an incurable form of cancer. It’s a very difficult disease to treat,” Przypyszny said.
For the Sullivans, the clinic feels like a haven of treatment.
“After I’m gone, I’m glad to know that my children and grandchildren will be taken care of,” Mr. Sullivan said.
The clinic is fully operational and treats patients 18 and older from Arkansas and neighboring states. Patients can make their appointments by calling 501-296-1200.