Patients and staff at the University of Arkansas for Medical Sciences are celebrating a new clinic for adults living with a rare genetic disease.
Though it began accepting patients late last year, the UAMS Winthrop P. Rockefeller Cancer Institute on Wednesday formally dedicated the clinic for adults with neurofibromatosis, or NF.
The clinic’s director, Dr. Erika Santos-Horta, says her goal is to elevate Arkansas as a national center for research and care.
“We will continue to grow, because we’re going to bring more resources, we’re going to increase our staff [which] will make us see more and more patients. In the next two years, we will be taking our first steps in the direction of bringing the best care to our neurofibromatosis patients,” she said.
Santos-Horta says 70 patients are currently served by her clinic, up from 30 when it first opened late last year. Neurofibromatosis refers to three diseases which typically cause non-cancerous tumors to form in the brain, spinal cord and nerves as well as the skin’s surface.
Cancer Institute Director Dr. Michael Birrer says adults often face challenges in getting treatment after aging out of the pediatric healthcare system.
“That creates a hugely complex path. It does predispose to redundant care, it predisposes sometimes to unnecessary procedures,” Birrer said. “That’s why we are delighted to have the NF clinic which will meet that unmet need by coordinating the care for these patients.”
That was the case for Kathleen Sullivan’s husband and two sons, who are now patients of the clinic. She says she hopes to see similar clinics sprout up across the world.
“How do you express the people the profound joy? Because that’s what it is. It’s joy in knowing I can’t change their circumstances, I can’t change his disease, but we have the opportunity to get the care that you can’t get anywhere else in the U.S.,” Sullivan said.
About 2.5 million adults are living with neurofibromatosis, which currently has no cure. The UAMS clinic has been formally designated by the Children’s Tumor Foundation, which also announced a $500,000 donation on Wednesday.
