One in a million
UF&Shands helps patient with rare disorder
By Jennifer Martinez Pinillo
Not many neurologists come across patients like Brittney LeDuke during their careers.
When Brittney was 3 months old she was wrongly diagnosed with epilepsy, a common neurological disorder in which a person repeatedly suffers from seizures. But after seeing several neurologists, she was diagnosed with a rare neurological disorder called alternating hemiplegia of childhood at age 12. Irene Malaty, M.D., the medical director of the National Parkinson Foundation Center of Excellence at UF, has been Brittney’s neurologist for more than four years.
Alternating hemiplegia of childhood only affects approximately one in a million people, although the number of affected people may be higher due to the common misdiagnosis of the disorder, Malaty said.
Hemiplegia occurs when part of the body enters a state of paralysis. The spells of paralysis vary by patient. They can range from numbness to complete loss of feeling and movement. The spells can also last for minutes, hours or days.
Sometimes one or two of Brittney’s hands will stop working for a day. Sometimes she spends 20 minutes without being able to walk, talk or blink.
Brittney also experiences what she calls dancing hands, or involuntary hand movements between spells.
Malaty began to inject Botox into Brittney’s hands to help combat her dancing hands. Botox is typically used in patients with dystonia, a movement disorder that causes the muscles to contract and spasm involuntarily.
Because it is rare to find patients with alternating hemiplegia of childhood in common geographical areas, it is difficult for doctors to conduct research to treat the disorder. Malaty has had to carefully listen to Brittney’s symptoms and consult anecdotal reports to find out what other doctors have tried in similar cases.
Brittney, who now lives in Oviedo, moved to Florida from New York City about five years ago.
“When we moved down here I was very nervous about finding a neurologist,” said Sheri DeLuke, Brittney’s mother. “Even though we are two hours away we are very confident in our decision to go to Shands.”
Today Brittney is 24 years old. She plays baseball and cheers with the Oviedo Challenger League. She volunteers two days a week at a high school mail room and front desk, and attends a day program for young adults with disabilities, called RAPID.
“Despite all that she has to endure her spirits remain high for the most part, and she usually has a smile on her face,” Sheri said. “She is surrounded by so many people that love and adore her, and for this we are truly blessed.”