TBM Tenacity

Jennifer Champy fights a rare disease

Robert Clark

Imagine not being able to breathe correctly and having no idea why. Imagine being 30 and struggling with everyday activities such as climbing stairs, doing laundry, and walking without any explanation as to what is going on. Imagine having a rasping cough that increases over time, controlling every aspect of life until it’s all consuming and causing breathlessness with no hope of living a normal life.

Jennifer Champy, who is now 45, experienced this problem throughout her mid-30s and early 40s. A worsening cough and breathing issues became so merciless that she has been intubated 25 times and received a tracheostomy, a permanent breathing tube, in attempts to save her life.

Jennifer was born and raised in New Jersey and attended nursing school there, but she made her way to Columbia 11 years ago to take a job at Palmetto Richland Emergency Room, enjoying wholeheartedly a career as a nurse. But while she had a genetic inclination towards cystic fibrosis — along with asthma and other health conditions — she also had a ragged, guttural cough that seemed to be getting worse and was completely unrelated to her other health problems.

The enigmatic disease Jennifer has is a rare airway disease called tracheobronchomalacia, TBM for short. TBM happens when the walls of the airway — specifically the trachea and bronchi — are weakened and cannot function properly while breathing. During exhalation, the airways collapse too much and become blocked, meaning that breathing is almost impossible.

The symptoms involve a progressively worsening bark-like cough, shortness of breath, and chronic infections that do not respond to normal respiratory treatment. Oftentimes, the diagnosis is hard to come by because it does not show up on many tests. CAT scans are frequently performed while patients hold their breath. In that state, patients do not have the dynamic collapse of the airway because they are holding their breath, and technicians will rarely detect the underlying issue. A doctor must be actively aware of and looking for TBM, to prevent a misdiagnosis. Raising awareness is key.

When Jennifer found a diagnosis and hope for a surgical cure, she was ecstatic. While she initially improved, ultimately Jennifer’s airways recollapsed, and she has had several surgeries since then. A small percentage of patients with TBM simply cannot recover even with surgery, and Jennifer continues to struggle with her health.

Even though there are no more options at this time to help Jennifer breathe, she is eagerly anticipating the continuation of research so that someday she may again have a chance to breathe more easily. Her own struggles did not lessen her desire to help others with TBM, though, and she began a foundation in 2016 called the Tracheobronchomalacia Airway Foundation, known as Cure TBM. Along with partners in the medical field, she works tirelessly to raise awareness of the disease and advocates for patients each and every day as they cope with the symptoms and walk through the treatment process for TBM. Her foundation also helps raise funds for research towards the disease as well as supports patients in making the connections they need to receive the best possible care.

“I choose positivity every day,” says Jennifer. “Every day, I find something to be grateful for. Every day, if I’m feeling particularly sad or worried, I go out of my way to support someone else.”

In only two years, Cure TBM has hundreds of people in its support groups, and it has been crucial in getting the word out about the disease. More patients are receiving the diagnosis they need, confirming the foundation’s impact.

Helping people keeps Jennifer going despite her own continuing health struggles. She is honest about the fact that her life is hard and that her dreams did not work out the way she hoped. “I’m passionate about people getting the help they need to breathe, lending support, and providing resources to all affected with the disease,” she says. Of course she did not want TBM, but adds, “Although I had always dreamed of being a mom with four kids, the thing most little girls dreamed of, I am grateful to God for my life and for the support I have in my life.” Jennifer’s tenacity is apparent, and her life has inspired countless people as she fights daily for perseverance and strength while advocating for others.

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