"That was my biggest thing," he said. "I needed to have treatments for the rest of my life."
With the help experts from NHGRI, Platt appealed his case to an physical evaluation board. His doctors said that although the mutation predisposed him to Von Hippel-Lindau syndrome, some aspect of his service -- such as repeated exposure to the solvents used to clean weapons -- could have triggered the tumors.
Platt ultimately won his case and was granted disability payments of about $2,000 a month. He now travels the country as a motivational speaker talking about his fight against his disease.
The helicopter pilot with the Factor V Leiden mutation also appealed her case, going all the way to the Army surgeon general to win a medical retirement.
But Miller, the Army ranger, did not fare so well. Even though he had the same disease as Platt, he lost his appeal and was discharged without benefits in 2005.
He still has to monitor his slow-growing tumors and be on the lookout for new ones. But without Tricare coverage, he can't afford to see a civilian doctor close to his home in Oak Ridge, Tenn.
Instead, he travels an hour and a half to the Veterans Affairs facility in Johnson City at least twice a year. Every so often, he makes the three-hour drive to another VA facility in Lexington, Ky., to see a neurologist with expertise in his disease.
The worry never leaves him. His genes guarantee that he will never be cured.
karen.kaplan@latimes.com
