Finding Hope Through LAM Community Engagement

Posted on May 14, 2021   |   

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I was diagnosed with LAM and probable Tuberous Sclerosis Complex (TSC) in 2019 at 26 years old, when I was working three jobs and attending graduate school in Colorado. As an active twenty-something still trying to figure out my life, the stress of understanding what this diagnosis meant for my future weighed heavily on me.

Many questions came to mind, when will my condition worsen?

When will I not be able to run endurance races because I can’t catch my breath? Can I still have children of my own?

 

Fortunately, The LAM Foundation has lifted much of this stress by giving me the resources to help answer these important life questions. Due to the Foundation’s research grants, I can pour over dozens of studies about LAM progression written by dedicated scientists and researchers, including my own pulmonologist, Dr. Gregory Downey. With The LAM Foundation’s informative sessions like “Exercise & LAM: What Do We Know” hosted in May 2020, I’m able to better understand how to safely train for races while having a progressive lung disease. And because of the Foundation’s collaboration with the Tuberous Sclerosis Alliance, I could connect with top experts at the National Institutes of Health (NIH) to determine whether my unique type of TSC could be passed along to my biological children.

Without a doubt, the most rewarding aspect of my engagement with The LAM Foundation is being included in a supportive community that goes above and beyond to fight for myself and my fellow LAM sisters – no matter what it takes!

Read more about The LAM Foundation's resources for women with LAM and register today to stay up to date on the latest patient information, educational webinars, LAM research, and more.

About Kelly O’Toole: Kelly lives in the Front Range foothills of Colorado, where she works for the Bureau of Land Management. She enjoys many of the same public lands the agency manages! Getting diagnosed with LAM in 2019 hasn’t stopped Kelly from enjoying some of her favorite things, including hiking with her fiancé, gardening, and running with her cattle dog Finn (though some days are definitely slower than others!) 



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