Jennifer Champy was in the prime of her career as a nurse when she started experiencing a chronic dry cough and difficulty breathing. She tried everything to figure out what was going on: “I went to the biggest hospitals in the country; no one could tell me what was wrong.” Her symptoms progressively worsened, and eventually, after receiving multiple intubations and a tracheostomy, it became so bad that she had to live in an acute care long term facility. Doctors performed test after test and still no one could figure out what she had. Finally, through her own research, Jennifer found the TBM Program at Beth Israel Deaconess Center in Boston and convinced them to see her. It was there that she was diagnosed with tracheobronchomalacia, or TBM, and received a surgery that opened up her airway called a Tracheobronchopexy. After years of searching for an answer, Jennifer could finally breathe again. “I made a vow when I was living in the long-term acute care center that if I ever got help, I would spend the rest of my life helping other people,” and that’s just what she did.
Jennifer started an online support group as well as a 501(c)(3) Non-profit foundation, Cure TBM, to raise funds for research, raise awareness for TBM, and to get TBM patients the treatment they need at the Beth Israel Deaconess Center in Boston for adults and Boston Children’s hospital for the children.
She is currently working with patients in several other countries to try to get them the help they need as well. In tracheobronchomalacia, the airway closes on exhalation. Because of this, it is not often caught on standard tests, and many patients are misdiagnosed with bronchitis or chronic respiratory failure. Adult patients are told they are “anxious”, “need to lose weight” or have a-typical asthma. Many of the parents are told their child will “outgrow” it. Jennifer’s goal as the founder of Cure TBM is to continue to raise funding for research, support the top experts in this field as they seek to educate their colleagues and bring awareness of TBM so that patients and physicians outside of the Boston area will recognize the symptoms and do more accurate tests to properly diagnose and treat the condition. Since the inception of Cure TBM, Jennifer has raised the funds to support a few clinical trials at BIDMC She also reaches out to her social media followers to get airline points donated. To date, she has been able due to the generosity of her followers to fly 37 people to Beth Israel Deaconess and Boston Children’s hospital to receive the same treatment she did. She’s even driven people to Boston herself!
Even though her condition has held her back from pursuing a career in nursing, Jennifer has been able to pour her passion for helping people into Cure TBM. “It’s given me so much drive to speak life into [these patients] and find treatment for them. One of my strongest missions in life is to make TBM a household name. My goal is to have TBM understood throughout the medical community, and to empower patients through validation.” Within the support groups, there are so many people who finally feel like they find validation for what they were going through and who no longer feel alone in their disease.
Ultimately, Jennifer has had the procedure to reopen her airway three times, and has spent most of the last three years in the hospital. She continues to work on Cure TBM, even from her hospital bed. Jennifer is awaiting research to catch up to her health condition before she is able to pursue other options to improve her health. Her dedication, passion, and strength in the face of her condition are humbling, but for Jennifer, it’s not about her – it’s about the people she’s able to help. “To see people that have been floundering like I did for years… finally reach a diagnosis and get treatment, is so rewarding. We’re watching kids come off their ventilators and finally live a normal life… One lady is now traveling the world at 75 years old after her surgery… [It’s a reminder that] it’s not really about me, it’s about someone being able to recognize the disease and get the help they need.” For more information about Tracheobronchomalacia, please visit CureTBM.org
Who’s made a difference in your rare disease? Whether it’s a teacher, parent, pastor, friend, or physician, if you want to recognize someone who has impacted your life, click here to nominate them! Not only do we hope to recognize those who have made a difference in the rare disease community, it is our hope that these stories motivate others with practical inspiration for how they can make a real, lasting impact in the community.