Jayde’s world turned upside down at just 18, when she went from being an active young adult to suddenly struggling to breathe. While with a friend one night, she started to experience chest pain and had difficulty taking deep breaths. She spent the entire night sitting up, struggling to catch her breath believing she just had a bad case of bronchitis.
The next morning, her mom advised her to go to urgent care. After waiting for more than an hour in the exam room to be seen, Jayde realized that she was not doing well at all and called for help. A chest X-ray revealed a collapsed lung, also called a pneumothorax, and Jayde was immediately sent to the emergency department.
Jayde was diagnosed with LAM (lymphangioleiomyomatosis), a rare lung disease that primarily affects women usually when they are of childbearing age. It is caused by abnormal growth of smooth muscle cells, particularly in the lungs, lymphatic system and kidneys. She initially spent two weeks in her local hospital before being transferred to a larger hospital where she stayed for four months trying to get stabilized as she continued to struggle with repeated collapsed lungs despite treatment.
A Turning Point
Jayde credits the amazing work of her specialist at the University of Florida in helping her stabilize and getting her onto the right medication to manage her disease. “My doctor figured out that my repeat lung collapses were coinciding with hormonal changes I was experiencing. Once he figured this out, he got me on a medication to help balance my hormones and I finally responded to the treatment for the pneumothorax.”
She also shares that her mom advocated for her from the very beginning. “When I was in high school, I was diagnosed with a benign kidney tumor, and doctors were unsure of the cause. At the time, my mom researched possible explanations and came across LAM. She asked whether it could be related, but the doctors didn’t think there was a connection. Later, when I was initially hospitalized with the collapsed lung, my mom raised the possibility again, and that pulmonologist took her concerns seriously alongside what was happening clinically.”
Finding Strength and Support
As Jayde transitioned home after her long hospital stay, she found strength, comfort and support in both her family and her specialist while learning how to live with a chronic illness. In the early days, her mom helped with everything from maneuvering around with a chest tube and IVs to supporting Jayde as she adjusted to life after her diagnosis. It took time for her to gradually return to her normal activities along with managing the ever-present fear that she would again experience the frightening inability to catch her breath.
Her Illness Doesn’t Define Her
Although LAM is a chronic condition, Jayde doesn’t let it stop her from living her life. It is important for people living with LAM to work closely with their specialist to ensure they are on a treatment plan that will help best manage their disease. Today, Jayde follows the plan that she and her specialist have worked on together. She continues regular follow-ups, undergoes blood work every few months, receives regular CT scans and lung function tests, and takes her daily medication. “I feel like I can do the things I want to do, live my life, work as a medical esthetician, do pilates, and that LAM isn’t stopping me from this.”
For Jayde, learning about her disease, working closely with her specialist and having a strong support system gave her a sense of control during an uncertain time. She hopes others living with a rare lung disease know they are not alone. Finding the right care and support can make a meaningful difference.
Learn more at Lung.org/lam.
Blog last updated: February 27, 2026
