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Fighting for a LAM Diagnosis and Now a Cure

Posted on August 05, 2022   |   

For seven years, I continually searched for answers because I knew something was wrong with my health. I had a hard time breathing and started coughing up blood clots with exertion or exercise. I went to several pulmonologists, but no one could find anything. On a family trip to Greece in 2014, I had a severe episode while swimming with my daughters. I couldn’t breathe, I became dizzy and almost passed out.  I spent two days in bed without being able to move. The

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Categories: Patient Profiles

Recent Articles

Articles for tag WWLAM

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You're Invited to LAMposium in Your Living Room on June 2, 2021

Posted on May 19, 2021   |   

This presentation will provide an overview of oxygen basics, assessing the need for oxygen, what to expect from your provider, integrating oxygen into your fitness routine, and future trends in oxygen reimbursement and access. This session will also highlight the patient experience and offer a demonstration and review of various oxygen systems. A group discussion will follow the presentations.

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Topics: LAMposium in Your Living Room WWLAM        Categories: Events

The New Zealand LAM Charitable Trust

Posted on June 16, 2017   |   

The New Zealand LAM Charitable Trust was founded in 1999 by Bronwyn Gray and communicates with nearly 20 women with LAM. The home office is located in Auckland, New Zealand with one full-time employee, a voluntary coordinator and fundraiser and an eight member voluntary trustee group. The LAM Charitable Trust works closely with Scientific Advisor, Professor Merv Merrilees and Medical Advisors, Professor John Kolbe from the University of Auckland along with Dr. Christine Forster.

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Topics: LAM Awareness WWLAM        Categories: Educational Resources

LAM Netherlands

Posted on June 16, 2017   |   

LAM-Netherlands was founded in 2010 by Ine van Meijeren and communicates with 60 women with LAM. The headquarters for LAM-Netherlands is in Wijk and Aalburg. The organization is run by four volunteers, when needed, they ask for help from local women with LAM and their families.

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Topics: LAM Awareness WWLAM        Categories: Educational Resources

FLAM Association - France Lymphangioléiomyomatose

Posted on June 09, 2017   |   

FLAM Association (France Lymphangioléiomyomatose) was founded in July 2001 by Michèle Gonzalves and communicates with approximately 160 patients. The head office is based in Gosselming (Moselle, department 57). The Council has 10 members, all volunteers.

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Topics: LAM Awareness WWLAM        Categories: Educational Resources

About Alambra

Posted on June 09, 2017   |   

Alambra, the Brazilian association for Lymphangioleiomyomatosis patients, was founded in 2004 by Simone Garcia Ribeiro and Flávia Patitucci Sobroza. There are currently 120 LAM patients registered in the database of the Clinics Hospital of the Faculty of Medicine of the University of São Paulo.

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Topics: LAM Awareness WWLAM        Categories: Educational Resources
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