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Rare kidney disease changes 8-year-old's life

By RICH SUWANSKI Messenger-Inquirer

OWENSBORO - Eight-year-old Owensboro resident Jeremiah Custer hopes to get a kidney transplant one day so he can be like other children his age.

Custer has a rare kidney disease called Focal Segmental Glomerulosclerosis, or a scarring of the kidneys that prevents normal function and causes him to become bloated with fluid, among other things, such as high blood pressure and high cholesterol.

There is no known cause or cure.

Custer was diagnosed with FSGS in 2009. About 5,000 people are diagnosed with it every year.

"It popped up randomly," said his mother, Sondra Stiff. "He woke up one day and started getting puffy. By that night, he had 8 pounds of fluid on him.

"He had so much fluid on his stomach, he looked like he was pregnant."

After doing lab work on Custer at OHRH, physicians sent him to Kosair Children's Hospital in Louisville for further evaluation. He was diagnosed with FSGS.

"They can only treat the symptoms, not the disease," Stiff said. "He's on 15 medications right now."

Some of the symptoms of FSGS include swelling in the stomach, face, hands and feet, high cholesterol and high blood pressure.

"His face is so swollen, his eyes are almost shut," Stiff said. "He's normal one day and puffy the next, and he doesn't look like the same kid."

Custer's medications include steroids, but they eat at the enamel on his teeth, and he's had five teeth removed. He also has cataracts.

Albumin transfusions help keep the bloating under control for a couple of weeks, Stiff said. Albumin is a protein in blood plasma.

"We do bi-weekly labs to try to catch it before he starts to swell up again," Stiff said. "So far, he's got 15 percent kidney scarring, and when his kidney function gets worse, there will come a point when he needs a kidney transplant. But we've been told that even if a gets a kidney transplant, (FSGS) can come back soon after the transplant."

Stiff said her son feels like an outcast when people "look at him funny" when he's swollen.

"He has a special diet at school _ a strict 2-gram sodium diet _ so he doesn't get to eat like the other kids," she said. "And when people look at him 'differently,' he just wants to hibernate. He's at the point where he wants to cancel his birthday party (April 30) because he doesn't feel like a normal kid.

"Fortunately, the staff at Burns (Elementary School) loves him so much."

Stiff has created a Facebook page called "Prayers for Jeremiah" with 949 "likes."

"I just want to spread the word about kidney disease," she said.

Stiff said she's met other families struggling with FSGS with her Facebook page and said talking with others going through the same ordeal helps.

"We're handling things the best we can," Stiff said.

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