You'd never guess, looking at her, that Megan Gilpin has kidney disease. "She's one of the lucky ones," says her mother, Holly Gilpin. Megan "has no outward signs of it."
But every day, Megan takes two medications normally used to control hypertension. Three or four times a year, she goes to her pediatric nephrologist. At least every six months, she has blood drawn for lab tests.
Megan has to make sure she eats regularly and gets enough protein — and that's not as easy as it sounds for a 13-year-old who doesn't like breakfast. But if she doesn't eat regularly and right, she gets lightheaded in her classes at Robinson Middle School, where she's in seventh grade.
Without the medication and monitoring, kidney damage and, eventually, kidney failure could progress quickly.
Eventually, Megan likely will need a kidney transplant.
Megan was 4 when a urine test at a regular well-child checkup showed she had too much protein in her urine.
The level remained high, so when she was 5, she had a kidney biopsy that showed she already had some kidney damage. The diagnosis: focal segmental glomerulosclerosis — usually called FSGS. It attacks the glomeruli, the tiny units in the kidney where blood is cleaned, and causes their scarring or hardening.
The diagnosis was overwhelming at first, Holly Gilpin says. Now it's something that Megan and her family take in stride.
Megan's friends will say, "You have kidney disease and you didn't tell me?" But it's not something that comes up in conversation, she says.
FSGS often has no outward symptoms, so patients find out they have it as Megan did, through a routine lab test.
FSGS is the second leading cause of kidney failure in children, according to the NephCure Foundation, a nonprofit organization that supports research to find a cure for FSGS and nephrotic syndrome.
There is no one cause for FSGS — and there is no cure.
Megan's disease has been kept in check, "but it's not something we take for granted," Holly Gilpin says.
Her doctor "says I'm probably one of the luckiest ones he's ever had," Megan says.
The NephCure Foundation estimates that more than 19,000 people have end-stage renal disease because of FSGS. The Gilpins have been told to be prepared for Megan to need a kidney transplant at some point — but even that isn't a cure, because the FSGS can return.
Megan has no restrictions in her activities but has to be careful about some things others take for granted: She can't take ibuprofen. Her older sister, Macy, noticed that the back of the deodorant Holly had bought for the girls had a warning: "Ask your doctor before using if you have kidney disease."
Holly, Megan and Macy, who is 15, went to Washington, D.C., earlier this year on behalf of the NephCure Foundation, to advocate for increased research funding for FSGS.
They met with Kansas Reps. Todd Tiahrt, Lynn Jenkins and Dennis Moore, and with legislative assistants for Sam Brownback, Pat Roberts and Jerry Moran.
That was "a little bit" scary, Megan says.
Among the highlights of the trip for the teen: room service breakfast in bed ("It was like, so cool") and finding out the next day that Joe Jonas of the Jonas Brothers was in the legislative room she'd been in, 10 minutes after her ("It was OK not meeting him. It was just cool being in the same room").