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Breathing freely
One Milwaukeean’s battle to overcome a rare tracheal disorder


By REBECCA KONYA
Photo by Jess Pliszka

April 2016

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

Local Study Aims to Help Children Suffering From Asthma

By Craig McCarthy

A five-year study is underway in the City of Milwaukee to try to reduce irritant exposure in the homes of children who suffer from asthma. Funded by a $1.25 million grant from the Greater Milwaukee Foundation, the study is a joint effort between Children’s Hospital of Wisconsin and the nonprofit organization Fight Asthma Milwaukee (FAM) Allies.

"We’ll be looking specifically to measure our clients’ exposure to irritants in their homes," says Erin Lee, program manager at FAM. She also helped write the grant.

Some common home irritants include cigarette smoke, dust mites, pets and animals, pollen and mold. Leading the study is Dr. Mitch Grayson, an allergist/immunologist in Milwaukee. He’s the medical director at FAM, an associate professor at the Medical College of Wisconsin, and author of the proposal on asthma research for which the study is based.

"What we really want to do with this study is, first, focus on the idea of measuring what is actually in these homes in the Milwaukee area, and then say, ‘OK, now once we know what’s in the home, what can we do to reduce the exposure?’" says Grayson.

Once eligible homes with a Milwaukee ZIP code have been identified, members of FAM will conduct several visits and follow-up phone calls with the residents over a six-month to one-year period. Families will receive asthma education and be provided equipment, such as bracelets that pick up and identify airborne irritants and an air-quality monitor. The monitor measures the changes in particulate matter from room to room.

There’s also a blood draw, which is required as part of the study. The blood will be analyzed for genetic markers — markers that may help researchers predict who’s going to respond to irritant reduction.

A total of 50 subjects will take part in the study. Grayson says the goal is to not only provide immediate assistance and relief for those asthma sufferers enrolled, but to gather data that can then be used to have a much broader and long-term impact on society and improve the overall health care system. M

 







 


This story ran in the April 2016 issue of: