Posted on December 01, 2022 |
In 2020, Meagan Knight was a young newlywed, working as a nurse in a hospital COVID-19 unit when her lungs collapsed.
No, it wasn’t COVID-19. It was lymphangioleiomyomatosis (LAM). Suddenly, Meagan wasn’t the one helping others, but the one needing help.
Overwhelmed and frightened by this unknown disease, Meagan turned to her social media network, where she connected with other women living with LAM, and eventually, The LAM Foundation. That made all the difference. Where there once was fear, there is now hope. “To have the support from all these other women and doctors and people that care about us was reassuring. I did not feel alone anymore,” Meagan said. This was especially meaningful during an isolating pandemic.
After 12 chest tubes, many lung collapses, and countless surgeries, she realized that LAM is not like other, more commonly treated diseases. “The harsh reality of LAM is that many medical professionals have never heard of it and do not know how to treat it. I realized with this disease, I would need to be an advocate for my own health, and eventually, try to advocate for so many other women.”
Meagan is grateful to The LAM Foundation, and to LAM doctors and researchers, for working tirelessly to improve the lives of LAM patients. Accessible and informative, they have provided Meagan with a safe, calm space in which to voice her concerns and fears. “I was told that although it comes with many burdens, this disease is not a death sentence,“ Meagan is impressed by how much LAM clinicians and researchers care about each individual patient. “Not once since my diagnosis have I felt like a number.”
Support from the Foundation, and from her husband Austin, has helped Meagan take back her life and not let her LAM diagnosis define her. She is studying to become a nurse practitioner while continuing to work part-time as a nurse. Elsewhere, friends and family are always present to keep her focused on her life apart from the disease.
Meagan is deeply committed to the LAM community. She takes every opportunity to support The LAM Foundation -- by fundraising, advising newly diagnosed young women, speaking at LAMposium, and even writing an article for medical professionals about her experience. “The most remarkable thing about the Foundation is their willingness to reach out to individual women and connect us with the doctors that we need, and with the other patients who have been through similar things,” she adds. “How on earth are you supposed to figure that out by yourself?”
To overcome any setbacks, Meagan holds onto a tremendous sense of hope. She encourages fellow patients to adopt this mindset by sharing their stories and doing what they can to support the Foundation. “We might not ever see the fruit of our actions and support for one another and the future of LAM, but it still makes a difference. Even though our individual impact may seem small, it matters.”