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Featured Article

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Finding Hope Through LAM Community Engagement

Posted on May 14, 2021   |   

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.

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Topics: Community Engagement diagnosis        Categories: Patient Profiles

Recent Articles

Articles for tag COVID-19

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Finding our New Normal: The Rise of Telemedicine for LAM

Posted on April 22, 2021   |   

Telemedicine – the use of video technology to offer “virtual visits” as a substitute for conventional face-to-face visits – has been available for over a decade. However, its use was limited because neither government nor commercial insurers provided reimbursement for telemedicine visits. As a result, only a handful of health systems offered this option, and patients choosing this option often had to pay out of pocket. The COVID-19 pandemic has accelerated the widespread implementation of

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Topics: COVID-19 Telemedicine        Categories: Educational Resources
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Join Us for a COVID-19 Vaccine Update Town Hall on April 20

Posted on April 12, 2021   |   

The LAM Foundation has partnered with the Tuberous Sclerosis Alliance to host a Virtual COVID Vaccine Update Town Hall on Tuesday, April 20 at 6:00 PM ET| 3:00 PM PT.

Peter Crino, MD, PhD of the University of Maryland Medical Center and Nishant Gupta, MD of the University of Cincinnati Medical Center will provide updates on the current COVID-19 vaccines in the TSC and LAM

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Topics: COVID-19        Categories: Events
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Navigating Emotional Complexity During a Pandemic

Posted on April 08, 2021   |   
Author: Sharon Young

I have always loved a good adventure. Part of it is the challenge. Part of it is the spirit of discovery. Part of it is the adrenaline rush. And part of it is, or at least was, a sense of reckless abandon. Ahhh, the intoxicating invincibility of youth! And what a rude awakening it was when the world reminded the not-so-invincible me that I was a mere mortal after all.     

For me, it was specific experiences, such as getting lost in the woods with the last light fading or fighting an

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Topics: COVID-19        Categories: Patient Profiles
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Research Survey for Rare Disease Patients about Impacts of COVID-19

Posted on May 12, 2020   |   

Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families. 

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Topics: COVID-19        Categories: News