Giving voice to rare throat disorder - Albuquerque Journal

Giving voice to rare throat disorder

Suzanne Del Rosario

Suzanne Del Rosario is used to people offering her hot tea, a lozenge, a look of concern.

It’s a kindness, she knows, but it’s not necessary, although she’s not one to turn down a free cup of tea.

But her raspy, wheezy voice isn’t the result of a sore throat, bronchitis or the residual effects of laryngitis. She’s not sick that way, and she’s not in pain.

“For a joke, I tell people that my voice is like this because I yell so much at my kids,” she croaks like Darth Vader in a good mood. “Totally not true. But if you don’t bring humor to this, it could otherwise be tragic.”

She has a rare breathing disorder called tracheal stenosis, a narrowing of the trachea, or windpipe, that causes breathing and vocal problems. Because no one knows the cause of her disorder, it’s called idiopathic – true for about 15% of all tracheal stenosis cases.

Curiously, nearly everybody diagnosed with the disorder is white and female and between 30 and 50.

Del Rosario, 51, was 29 when she was diagnosed.

It’s not known how prevalent the disorder is or what the best treatment is – there is no cure. Often, it’s misdiagnosed as asthma, chronic obstructive pulmonary disease or even a cold that lasts forever.

“I’ve been dealing with it for about 20 years,” said Del Rosario, a married mother of two who works with visually impaired students at Albuquerque Public Schools. “I’m still dealing with it.”

She tells her story now to give – ahem – voice to this often misunderstood disorder to encourage people to seek an accurate diagnosis and the support of others with the same disorder.

“My journey to this point in my life has been full of challenges,” she said. “But I’m better for them.”

As a child, Del Rosario was active. She was a competitive swimmer and had no problems with breathing or speaking.

Then in her 20s, she developed a cough that wouldn’t go away. A doctor diagnosed her with asthma and prescribed an inhaler.

That, she said, didn’t help.

“By then, I was working with preschool students, and when I did any sort of super-high activity, I would have trouble breathing,” she said. “I thought maybe I was getting out of shape or getting older.”

Evaluations of her heart, sinuses and lungs found nothing amiss.

Then, in 1998, an ear, nose and throat specialist took a look at her trachea and discovered that her airway was about the size of the opening in a coffee stirrer.

A year later, she underwent surgery to widen her airway and to have a tracheostomy tube inserted through an opening created in her neck to help her breathe better.

The tube remained throughout her first pregnancy in 2000 and was removed when it appeared her trachea was sufficiently opened on its own. Then another tube was inserted in 2002 through her second pregnancy.

In 2008, that tube was removed so she could go swimming with her children. She began traveling to Boston’s Massachusetts General Hospital to be treated by Dr. Cameron Wright, a thoracic surgeon who specializes in tracheal surgery. But the surgery provided only a temporary fix.

She underwent other procedures both in Boston and at the University of New Mexico Hospital in Albuquerque that included using a balloon-like device to dilate her trachea and surgical snipping away scar tissue. In all, she estimates she has had upward of 30 surgeries.

So many invasive procedures in such a confined space left her with the hoarse voice that causes hot tea to appear.

Soon she will travel to the Mayo Clinic in Scottsdale, Arizona, to establish medical care there, far more convenient than Boston.

She expects no miracles.

“I don’t go to the doctors with an expectation of being cured, because there isn’t a cure,” she said. “It’s ongoing. My airway is never going to be normal. I’m never going to be able to run a marathon, but I don’t want to run a marathon. I’m good with that.”

Life, she said, is good.

She’s happily married. Her children – now 17 and 19 – are healthy (and no, she really doesn’t yell at her kids – she texts them). She loves her job and the children she serves. She has good health insurance. She has the support of her family and of the thousands of others with tracheal stenosis who congregate in Facebook groups such as the Tracheal Stenosis Foundation.

What she wants is just to keep breathing, keep speaking out, keep enjoying life, measured out in well-meaning cups of tea.

UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor.

 

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