In some cases, a patient who has been on drugs for a while can be taken off them, but they are carefully monitored while in this state which is known as remission.
However, Wegener's is not cancer.
"I always am pretty careful to point that out to patients," said Langford.
Wegener's is also generally treatable. While once a fatal disease that killed most patients in five to six months, most patients will respond to treatment.
But they do need monitoring.
"People can have complications as a result of their treatment," said Langford. "Because all of these suppress the immune system…there can be infections."
But while the outlook has improved for these patients, Langford notes that many aspects--such as how the disease originates and how it progresses from inflamed blood vessels to problems with the kidneys and lungs and many other areas the blood vessels reach--remain unknown.
"We've come a long way with this illness, but there's a lot we have left to learn," said Langford.
For most people, a cold is a cold.
"Colds go away, so with a cold you should not have arthritis," said Hellmann. "Colds do not cause you to cough up blood or cause you to become noticeably short of breath."
"Most colds get better within a week," he said.
But he added that, "anything that lasts more than a week or two should be looked at."
And Cosner wants people who may have the same disease he has to know about it.
"WG is something that's totally not well known," he said. "Mostly, everybody that I've talked to was misdiagnosed."
But while he doesn't blame his own doctors for the disease, he would like others to be aware of it.
"That's just part of the game, and I just really want to spread knowledge about that," said Cosner.
Sara Loeffelholz contributed to this report.
Do you have more information about this topic? If so, please click here to contact the editors of ABC News.
