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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

Management of Pneumothorax – What is the Best Strategy?

Posted on November 21, 2017   |   

Pneumothorax (collapsed lung from accumulation of air between the lung and the chest wall) is a significant problem in patients with LAM. Up to 70% of patients will ultimately develop at least one pneumothorax in their lifetime and this is often the first sign of LAM. Most commonly, the pneumothorax occurs spontaneously without inciting factors (such as vigorous exertion). Unlike patients with Primary Spontaneous Pneumothorax (which occurs in patients without apparent underlying lung disease) who have about a 25% risk of recurrent pneumothorax after a first episode, three-quarters of women with LAM suffer from recurrence if nothing is done to prevent it. In a survey conducted from The LAM Foundation database, participants reported an average of 3.5 episodes of pneumothorax resulting in an average of one month total spent in the hospital.

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Topics: pneumothorax        Categories: Educational Resources

Pulmonary Lymphangioleiomyomatosis (LAM): A Monogenic Neoplasm That Provides a Window into Cancer

Posted on November 21, 2017   |   

The LAM community including LAM researchers, clinicians and patients has made incredible progress over the last 20 years. Frank McCormack and I were honored to write an invited review article “Lymphangioleiomyomatosis: A Monogenic Model of Malignancy” for the prestigious The Annual Review of Medicine, which covers significant developments in various fields of medicine since 1950.

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Topics: Research        Categories: Educational Resources

The Gift of New Lungs and New LAM Cell Discoveries

Posted on November 21, 2017   |   

In early July, LAM Patient, Linda Grunberg received a much-anticipated call from the lung transplant program at the Hospital of the University of Pennsylvania (HUP), that it was her turn to receive new lungs. After living with LAM for nearly 20 years, she was certainly ready, “As a LAM patient, I've been coming to HUP for 19 years and had the utmost confidence that this would be the best place to have my transplant.”

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Topics: Lung Transplant Tissue Donation        Categories: Educational Resources
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Rare Disease Advocates at Work!

Posted on September 29, 2017   |   

Global Genes Summit

Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!

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Topics: Advocacy Global Genes LAMposium LA Patient Benefit Patient Benefit Conference Rare Diesases TS Alliance        Categories: Educational Resources

Anyone Can Be a Fundraiser

Posted on September 08, 2017   |   

From the start, Kristy and I committed ourselves to giving all we could to support The LAM Foundation’s research. But after a couple of years I realized there is only so much that one family can do alone. So, I decided I was going to have a “fund-raiser”.

I had heard many of the success stories about patients, their families and friends having fund-raisers. But, even though I have always enjoyed giving to other people, the idea of asking for money for myself (or even for my family) makes me uncomfortable. I know that a lot of people probably feel this way, but this just was too important to let those feelings deter me.

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Topics: Fundraising        Categories: Educational Resources
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