David Cosner has changed a lot since the summer of 2006—ever since he first noticed a runny nose while attending a motorcycle race in California.
He suspected a cold and when he and his family returned to Austin, Texas, he had his condition checked out.
A series of cold and sinusitis diagnoses followed. Cosner said he visited more doctors than he can remember--a number he places somewhere between 15 and 50 visits.
But it was clear that what he had was far worse than the common cold.
"I was feeling horrible, I was losing lots of weight," Cosner recalled.
The 6-foot-4, 164 pound lacrosse player dropped to 132 pounds, and suffered numerous nosebleeds. Finally, he visited his father's ear, nose and throat doctor.
After an inspection of his nose, Cosner remembers being given a strong antibiotic and instructions to return in a few days if he didn't feel better.
He didn't get better. On the day he turned 17, Sept. 20, 2006, Cosner underwent a nasal biopsy.
"It wasn't two days after that that the biopsy came back positive for WG," said Cosner, referring to Wegener's granulomatosis. "I really didn't know the severity of it at the time."
Now 19, the Texas State University at San Marcos student has adjusted to life with the disease, and is making efforts to publicize it to others in the hopes that the rare condition can be diagnosed more quickly.
Wegener's granulomatosis is an inflammation of the blood vessels that can ultimately lead to problems with the kidneys, lungs, joints and other areas of the body.
"We don't know exactly what causes it. It's thought to be an autoimmune disease," said Dr. David Hellmann, chairman of the department of medicine at the Johns Hopkins Bayview Medical Center.
Hellmann characterizes autoimmune diseases as being like police brutality, where immune cells that are supposed to be protecting the body begin to attack it instead.
For Cosner, his own diagnosis was intimidating, but he has resolved to live his life in spite of it.
"I was pretty scared, but I kind of just said at that moment, I've got to take the bull by the horns. I've got to make the best of this and take the cards that were dealt to me. And that's what I've been doing for two-and-a-half years, almost," he said.
But life with Wegener's has not been without its travails.
"I went from being a healthy 6-foot-4 teenager that could run 100-meter wind sprints all day long to having trouble climbing a flight of stairs," said Cosner.
That has been a great challenge, he said, at college, where "everything here is hills and stairs."
But he has made some adjustments. While he excelled at lacrosse in high school, he has picked up activities he enjoys that don't require the same stamina.
He has taken up bowling and tournament bass fishing, and stays in shape by lifting weights, in between time with friends and his school work.
Games like basketball are out, however. "I get really winded pretty quick. Once I get up the court I have to stop. It's like a severe asthmatic, almost," said Cosner.
One of the reasons for the difficulty in diagnosing Wegener's is how it appears in patients.
"There can be a whole spectrum as to how this can first present," said Dr. Carol Langford, a staff physician in rheumatic and immunologic disease at the Cleveland Clinic.
She explained that some people may have symptoms for weeks or months while others will become ill in a matter of days.
"It can be a challenging diagnosis to make," she said.
Langford has been one of Cosner's doctors in Cleveland. Cosner travels there every three to five months for surgeries to treat complications in his lungs that have resulted from the disease.
Because of the nature of Wegener's, some of its treatments are similar to those used for cancer patients.
"We think the immune system is overactive, and our treatment is geared toward trying to address this," said Langford.
Treatment typically includes smaller doses of chemotherapy drugs (given orally, rather than injected) designed to reduce the immune response.
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.