Fountain Valley girl speaks out about rare kidney condition that caused cholesterol levels to soar

FOUNTAIN VALLEY, Calif. (KABC) -- An 8-year-old Fountain Valley girl wants to tell you about a rare kidney disease you've probably never heard of.

Just being able to tell you gives this young warrior hope that someone, someday soon, will find a cure.

At the age of 4, Alyssa Karathanas received some strange news: She had really high cholesterol.

"Two hundred is high for an adult, and she was at 600," said her mother, Madelynn Karathanas. "He was like, 'That's insanely high!'"

For seven months, Alyssa went to a cardiologist.

"Her heart looked fine," Madelynn said. " She's like, 'I can't explain why she has high cholesterol.'"

It wasn't until Alyssa saw a nephrologist that they got an answer: a rare kidney condition called focal segmental glomerulosclerosis, or FSGS.

The director of Children's Hospital of Orange County's Nephrology program, Dr. Dorit Ben-Azur, said Alyssa's immune system is attacking her kidneys.

"This is a kidney disease that causes the kidneys to spill protein," she said.

Ben-Azur said to think of the kidney as sieve and the pasta as protein. If the sieve is working well the protein remains in the kidney while waste is filtered out.

"When there is FSGS, the holes become bigger, there is damage there," Ben-Azur said.

The protein escapes, causing dangerous problems throughout the body.

Ben-Azur said Alyssa has not responded to anything and has received at least seven different types of medication.

These strong medications, used to treat other diseases such as lupus and cancer, keep Alyssa on edge.

"Because I don't know if I have to go to the hospital or not," Alyssa said.

That's why Alyssa's family and friends raise funds to spread awareness about FSGS so more research can be done.

"My friend and I started an online store, but I feel like I wish people knew more and would want to help," Madelynn said.

"A rare disease is only rare until it happens to you," said Madelynn's friend, Beth Alcala.

Because FSGS is rare, insurance doesn't cover many of Alyssa's treatments. A GoFundMe page has been set up to help her in her fight.

Alyssa is a brave warrior, but she wishes she could get more people to fight alongside her.