Patient and Family Resources
Providing resources, hope, and support is central to the mission of The LAM Foundation. Below are several ways that individuals with LAM can connect and share their experiences, as well as learn more about LAM.
There are many programs in place to keep the LAM Community connected. Because LAM is extremely rare and patients are spread across the globe, we’ve designed the following programs to bring patients and families together so they can learn from each other’s experiences.
Volunteers provide regional support for women with LAM across the United States and Canada. LAM Liaisons host educational meetings and social gatherings, both virtually and in person. Educational meetings provide patients with opportunities to meet and interact with LAM specialists from nearby LAM clinics. Social gatherings provide an informal opportunity for patients to connect with one another, sharing stories, experiences, and advice.
The WLPC is a network of LAM patient advocacy groups located around the world. Working together, members of the WLPC share resources and connect individuals with LAM across the globe. The WLPC sponsors Worldwide LAM Awareness Month (WWLAM) every June to raise awareness and facilitate research collaboration.
The Circle of Hope (COH) Transplant Support Program is designed to support those members of our community navigating not only LAM but the prospect of a lung transplant as well. Our program offers virtual support meetings, educational webinars with experts in the field, tissue donation education, and one-on-one guidance through peer mentoring.
Social media creates a natural way for individuals living with LAM and their families from around the world to connect. The Foundation hosts pages and groups via several social media channels to bring the latest information about LAM to our community.
The LAM Foundation social media pages are communication tools used by The LAM Foundation to reach out to all of those touched in some way by LAM. These pages are a great tool for learning what’s happening with the Foundation and great resources for learning more about the disease.
The LAM Foundation Community is an open Facebook group where LAM patients, families, friends, physicians, and researchers can learn more about LAM and talk about what’s happening in the LAM Community. We discuss raising awareness, fundraising, publications, breaking news, sharing stories and ideas – anything that is productive for future growth in the fight against LAM!
Several publications are available to patients living with LAM as well as family members and friends. To receive this information, please Register with the Foundation.
This comprehensive resource is a great tool for patients living with LAM. It was written by women with LAM for women with LAM and offers insights into every aspect of living with the disease.
There are several online resources available to help inform and educate patients and healthcare providers about LAM.
A diverse collection of educational videos is available in our video library for viewing at any time. Videos include LAMposium in Your Living Room, regional events and classic presentations from in-person events.
Our newsletter library features our e-newsletter Currents and contains an archive of the print newsletter Journeys which was a print publication prior to 2020.
Other Helpful Resources
Emergency Room Quick Facts Cards for LAM
This wallet-sized card provides physicians with necessary information about LAM, its treatment, and the ICD 10 code for insurance. There is both a digital version and physical card that patients and loved ones can carry. Contact us to request a card.
A concise treatment guidelines graphic funded by CHEST that has been translated into over 25 languages by our global partners.
The LAM Foundation Wellness Portal
A place for LAM patients to access content and resources for mental health needs. Join us for this video & MP3 series on mindfulness, movement, meditation, and more.
- Audio only – https://soundcloud.com/thelamfoundation/sets/wellness-portal
- Videos – https://vimeo.com/showcase/5885610
Tips for managing a cough.
Prescription assistance options.
*Patient needs to first discuss with their physician whether everolimus, rather than sirolimus, is an option for them.
Learn how you can get involved in LAM research and make a difference in finding a cure for LAM.
Many LAM patients have been advised to avoid air travel because of the theoretical risk of lung cyst rupture associated with atmospheric pressure changes during flight. The risk of air travel-related pneumothorax in women with LAM is approximately 1-2 episodes per 100 flights. This risk is low enough that in most LAM patients, air travel is considered safe. In advising individual patients with LAM about air travel, it is reasonable to consider additional factors, including a history of frequent or recent pneumothoraces, and the overall extent of cardiopulmonary impairment. Patients with poor cardiopulmonary reserve may tolerate even small pneumothoraces poorly. If patients have a newly diagnosed pneumothorax, complete resolution for at least two weeks before flying is recommended, based on expert opinion, and limited available data. In any patient with unexplained chest pain, shortness of breath, or symptoms suggestive of a new pneumothorax, appropriate radiologic testing should be performed before air travel. Assessment for the need for supplemental oxygen during flight should be undertaken similar to patients with other pulmonary conditions.
ICD 10 Codes for Accurate Billing
- Lymphangioleiomyomatosis ICD 10 Code – J84.81
- Tuberous Sclerosis Complex ICD 10 Code – Q85.1
This content was created for general informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.