Boys Town Pediatric Neuroscience Continues to Grow, Announces Rare Disease and Neurogenetics Care for Kids
Tuesday, May 4, 2021
Boys Town National Research Hospital is proud to announce the addition of the
Neurogenetics and Rare Disease Clinic as part of Boys Town's growing Pediatric Neuroscience program to help patients and primary care doctors alike who have been searching for answers to rare medical conditions.
Boys Town Neurogenetics and Rare Disease Clinic is led by
Dinesh Lulla, M.D., pediatric neurologist and neurogeneticist. Dr. Lulla specializes in the diagnosis and treatment of rare diseases that includes genetic epilepsies, leukodystrophy (white matter disorders of the brain), ataxia (balance disorders in children) and, a variety of different movement disorders, in addition to complicated genetic diseases and disorders that cause neurodevelopmental delays and regression in children.
In the United States, a disease is considered rare if it affects less than 200,000 people, or one in 1,500 individuals.
When asked what made him want to open the clinic, Dr. Lulla, whose calm and comforting demeanor is so reassuring to anxious patients, said, “When I was training as a general pediatric neurology resident, there were many patients with undiagnosed rare conditions. The way it impacts patients in terms of the physical burden of the disease itself, the emotional burden on the patient and the family, and the economic burden is difficult. I wanted to be an advocate for these patients in finding hope and a cure for some conditions, or just being there for them to explain a difficult diagnosis."
A Comprehensive Clinic for Neurological Puzzles
Treating rare diseases is often like putting together the pieces of a puzzle. Clinical presentations of rare diseases are not always clear – individual symptoms may lead a patient from one specialist to another. The goal of Dr. Lulla's clinics is to provide advocacy and hope for patients who have long been looking for answers.
“Often, a child with a rare disease will have multiple organ systems involved in addition to the brain," said Dr. Lulla. “Sometimes, they are seeing multiple specialists. But what is really important for them is to have a specialist in place who zooms out and looks at the bigger picture. I don't look at the body as 'this is just the heart' or 'this is a problem with the stomach,' but I'm looking at you as a whole person and connecting the dots to find the bigger picture."
Boys Town Neurogenetics and Rare Disease Clinic provides Omaha and the surrounding regions a place where patients can receive this type of comprehensive assessment. With each new patient, Dr. Lulla conducts a comprehensive assessment that includes a thorough physical examination, any necessary lab work and a review of the patient's family history. Supporting him is a dedicated neuroscience genetic counselor who helps the patient and family through a very detailed three-generation family history. Plus, the clinic works on authorizing tests with the insurance companies, so families don't end up with unexpected bills.
World Class Care in Nebraska
Boys Town Hospital is positioning itself to be the region's premier pediatric neuroscience provider. Prior to the recent founding of Boys Town Pediatric Neuroscience, Nebraska and the region have been historically underserved in this specialty.
“One thing that really got me interested in Nebraska is that it has been underserved, not only in neurogenetics but also in general child neurology care, which is my passion," said Dr. Lulla. “We want families to know that we do see rare diseases here," he said. “They don't have to travel to Colorado or Kansas City to look for an answer. We have the support team available here to help our patients go through that diagnostic journey."
Boys Town Neurogenetics and Rare Disease Clinic is open at the Downtown Medical Campus at 555 North 30th Street (30th and Dodge). Patients have access to the comprehensive team of pediatric neurologists and genetic specialists, as well as the neurology, neurosurgery and neurodevelopment programs that make up Boys Town Pediatric Neuroscience.