A year and a half ago, Jodi Pliszka began feeling short of breath. Over time, normal daily activities like climbing stairs, walking and even talking left her out of breath. Initially diagnosed with asthma and allergies, Pliszka tried various medications and inhalers with little relief.

"I sounded like Darth Vader," Pliszka says of the high-pitched wheezing that accompanied her breathing. "I was literally struggling for breath."

Then in January, Pliszka visited Dr. Jon Bock, an ear, nose and throat physician at Froedtert & the Medical College of Wisconsin, seeking treatment for her snoring. A fiberoptic scope revealed a significant narrowing of her airway. Bock diagnosed Pliszka with idiopathic subglottic stenosis (ISS), a rare disorder that affects the tracheal area directly under the vocal chords.

The exact cause of ISS is unknown. The disorder affects middle-aged women almost exclusively— in six years of treating patients with ISS, Bock has only had one male patient.

Pliszka admits that right after her diagnosis she was angry and upset.

"I was upset because I had lived with this for over a year," she explains.

But this wasn’t the first time Pliszka had been diagnosed with a rare condition. Nearly 30 years ago, Pliszka learned she has alopecia, an autoimmune disease characterized by the complete loss of hair all over the body.

"Having alopecia helped me," says Pliszka. "There are certain things I can’t control, but I can control how I react to my disease and how people treat me."

After losing all of her hair to alopecia three decades ago, Pliszka became an outspoken advocate for those living with the rare condition. Now she’s doing the same for people affected by ISS. She started a support group on Facebook (www.facebook.com/groups/IdiopathicSubglotticStenosisSupport), which drew nearly 200 members in under a month. In February she and her daughter developed a video, "Strangled From Within: Idiopathic Subglottic Stenosis," about her struggle to find a diagnosis for her breathing problems. In its first week on YouTube, the video had more than 1,300 views.

"I don’t want someone else to go through what I did," Pliszka explains.

Three weeks after her ISS diagnosis, Pliszka underwent surgery to remove the ring of scar tissue that was constricting her trachea and affecting her ability to breathe freely. Bock performed a laser dilation — the most common procedure used to treat ISS. After inserting a scope into her trachea, Bock injected a steroid to soften the scar tissue, then made a laser incision to remove the scar tissue. Finally, a balloon was inserted and inflated to re-expand the affected area.

Although the results of dilation are immediate, the downside is that it’s not a cure. The scar tissue always returns — within years or months of the procedure.

"One of the most rewarding things for people is that they wake up from the procedure like they never had difficulty breathing," says Bock. "The problem is that it slowly recurs again."

A new alternative to dilation is the injection of steroids into the tracheal band to soften and resolve the ring of scar tissue. But for the treatment to be effective, patients must have the steroid injections every four weeks.

For those with severe ISS or who have had multiple dilations, a tracheal resection may be considered. This major surgery involves removing the affected area of the trachea, then reconnecting the healthy trachea back together. It commonly requires a temporary tracheostomy below the resected airway and a stay in the intensive care unit following surgery.

Although there’s no cure for ISS currently, Pliszka remains positive. And since her surgery, she’s breathing freely again.

"I feel so much better," she says.

"I can walk up the stairs without getting winded." M