Disability Spotlight ...PKU

What is PKU? By Virginia E. Schuett, MS, RD, Director, National PKU News

PKU (phenylketonuria), in its “classic” form, is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. When treatment is begun early and well-maintained, affected children can expect normal development and a normal life span. (Not all elevations of blood phenylalanine require treatment; any child with a level less than 6 mg/dl does not need to be on a special diet and is not risk for mental retardation.) Until recently, the only treatment was a very strict diet that limits the amino acid, phenylalanine. Now, however, there is a drug called Kuvan that can help in some cases.

Excerpt from The National PKU news.

One of the students at Hope University has PKU. Her name is Cathy Acton. Cathy has an amazing singing voice, many have likened her to Barbara Streisand or Patsy Cline. She has been performing since the '70s. She is one of the lead singers in the Hope University Group, The Hi-Hopes.

Having PKU means that Cathy has to eat differently from people without the disease. She cannot have steak, a cheeseburger, chicken or fish. So she follows a strict vegetarian diet. Some of her favorite allowed foods are corn on the cob, her Mother's cooking and broccoli slaw with ramen noodles.

Cathy enjoys singing, knitting, crocheting, acting, traveling and reading books about the British Royals.
She is currently working on a recording called 'Cathy Celebrates England' a CD of songs that were either sung by British artists or written by British composers. Some of the songs on the CD will be 'Yesterday', 'I Could Have Danced All Night' and 'Feed the Birds'.

Having PKU and adhering to the diet have been difficult at times for Cathy, fortunately with the latest research a pill has been created to help those with PKU to be able to eat more foods with protein. Kuvan was developed by the pharmaceutical company Biomarin.

Cathy sure has not let her disability slow her down! She has traveled to England, Wales, The Netherlands, Germany, Switzerland, Mexico and Canada. She loves to travel and hopes to do much more in her future. Scotland may be next on her list!

Her favorite color is purple and she loves to go to tea houses for tea and scones. She had her last birthday party at 'Paris in a Cup' at the circle in Old Towne Orange Ca.

Cathy's philosophy is "Don't let anything stand in your way." Cathy sure has not let anything stand in her way, and we look forward to many more performances from her.

Thanks Cathy Acton, a woman with PKU.