By Eliza Lo Chin, MD, MPH – AMWA Executive Director
Today, I learned that in addition to June being Alzheimer’s & Brain Awareness Month, Migraine & Headache Awareness Month, World Infertility Awareness Month, and Pride Month, it is also Worldwide Lymphangioleiomyomatosis (LAM) Awareness Month. LAM is a rare lung disease “characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system, and kidneys.” (LAM Foundation)
I had been introduced to Dr. Lyndsay Hoy, Chief Mission Officer of The LAM Foundation, by Dr. Nancy Spector, Executive Director of ELAM (Executive Leadership in Academic Medicine). Dr. Hoy had come across my KevinMD blog post, The Hidden Struggle of Women with Rare Diseases, which I had written during Rare Disease Awareness Month and reached out to speak with me.
Dr. Hoy is a physician, patient, advocate, author, and leader. She is an anesthesiologist by training, now leading a global foundation that “urgently seeks new treatments and a cure for LAM.” Urgency is not uncommon, I have learned, within the rare disease space, as research is desperately needed to find therapeutic options in time for patients to access.
LAM is a rare, progressive disease that predominantly affects women, often manifesting during their childbearing years. LAM is not just a rare disease—it is a rare women’s disease, and its pathology, diagnosis, and treatment must be understood through the lens of sex-based biology, an area that AMWA has long championed. Diagnoses are frequently delayed, and the symptoms can be misinterpreted or dismissed as anxiety, asthma, or general fatigue. The journey of patients with LAM highlights these challenges and underscores the gendered bias that continues to shape the diagnostic process—something we at AMWA know all too well from our work in women’s health advocacy.
Yet their stories also raise complex, and often under-discussed, challenges about reproductive health. LAM progression may be influenced by hormonal shifts during pregnancy–yet guidance remains limited–and decisions about continuing a pregnancy can be fraught with uncertainty and risk. As AMWA continues to lead efforts around reproductive care access, we are reminded that rare disease advocacy must be part of the broader dialogue on women’s health equity. In doing so, we reaffirm AMWA’s commitment to advancing the health of all women—especially those whose stories too often remain unheard.
Learn more about AMWA’s initiative, Women and Rare Disease.