Individuals with TSC are at a higher risk of developing lymphangioleiomyomatosis (LAM). LAM is a rare lung disease that affects women more often than men, usually between the onset of puberty and menopause. It can cause shortness of breath or other complications such as recurrent lung collapse. Treatments for LAM can include medication (Rapamune®, sirolumus), oxygen therapy or lung transplantation in very advanced diseases. Ongoing screening and management are recommended throughout the lifespan. Proactively understanding symptoms that should be reported to the clinical team would include connective tissues disease symptoms, chyle leak, dyspnea, cough or experiencing spontaneous pneumothorax. Should these symptoms arise and are not explained by other factors, you should notify the TSC specialist for further recommendations.
The LAM Foundation has excellent resources and support for those looking for additional information on LAM.