Identical Minn. twins battle disease that afflicts only 500 in the U.S

WEST CENTRAL TRIBUNE | John Lundy

DULUTH, Minn.—Identical twins Jana and Sara Healy share more than petite builds, reddish-blond hair, a love of artistic expression and careers as cooks.

The 33-year-old sisters also share an organ-destroying disease that they have in common with only about 500 people in the United States.

It's a lonely thing to share.

"Nobody here has heard of cystinosis," said Sara, who lives with her boyfriend in Duluth and cooks at the Benedictine Health Center. "Nobody in Fargo knew about cystinosis," she said of the North Dakota city where Jana lives and cooks at a federally supported day care.

Certainly their parents, Jane and Dennis Healy of Williston, N.D., knew nothing of cystinosis as they saw their sixth and seventh children's development virtually stop by the time they were 1.

"They were 22 pounds and thriving and doing a real good job," recalled Dennis, a retired teacher and coach, in a telephone interview from Williston. "All of the sudden, they just threw the bottles out. ... They didn't want to eat anything."

Doctors advised them to give the girls Vitamin D and milk, he said, but it didn't seem to help. Continue reading
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