When Jamar Burley was just three, his eyes became puffy and his feet were painfully swollen. At first, his symptoms were attributed to seasonal allergies, but when Jamar stopped producing urine, his mother, Sanovia Thompson was alarmed.
When testing revealed potential kidney problems, Jamar was referred to pediatric nephrologist Rob Holleman M.D., who diagnosed Jamar's condition as nephrotic syndrome. "Jamar carries up to 30 pounds of extra fluid at times and his body can't pass it," says Sanovia.
"Nephrotic syndrome is a condition where the kidneys leak excessive amounts of protein into the urine. This leads to a fall in the blood protein level, which then causes the swelling that patients and families notice," says Dr. Holleman. "The most common cause of this condition in children is 'minimal change' disease. Nephrotic syndrome typically is treated with steroids and it is the patient's response to this treatment that dictates the long-term prognosis."
"The condition is known to relapse in the majority of cases, with many patients experiencing two to three relapses a year," says Dr. Holleman. "The ultimate outcome with steroid responsive nephrotic syndrome is good as most kids go into permanent remission eventually. Jamar's case has been particularly challenging as he stopped responding to traditional doses of steroid. With more intensive therapy, however, he is back in remission," adds Dr. Holleman.
Jamar has become especially close to the Child Life staff at Children's Hospital. "He just loves Miss Christy. All of the Child Life specialists make him feel like he is part of the family," says Sanovia. "They even keep in touch with Jamar when he is at home."