Lymphangioleiomyomatosis (LAM) Community

Meet, discuss & support other patients or families living with Lymphangioleiomyomatosis (LAM). Contribute to topics, or just share what's on your mind.

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martacampabadal
moderator

A tour through Europe by bicycle to increase awareness of LAM

A young Italian woman, Mara Toscano, after living in Australia for six years, was diagnosed with lymphangioleiomyomatosis (LAM), a pulmonary disease, in March 2016. Now that she's feeling fit and well, she's started I a tour through Europe by bicycle to increase awareness of LAM. Follow her journey at https://www.facebook.com/rideforlam

Final tour stops:
29 May Vaduz to Munich, Germany
6 June Munich to Prague, Czech Republic
15 June Prague to Berlin, Germany

HOW YOU CAN HELP (Mara's own words)
Share the project. I am keen to meet other women living with LAM in the countries I will visit so we can share experiences and be part of a documentary video.

I’d be very glad of somewhere to stay. I have a camping tent, but a shot shower and a great sleep in a bed will be very welcome.

I’m looking for sponsors to enable me to extend my itinerary and to support my expenses including food and other necessities.

Igor12
moderator

LAM Family Network (LFN) Travel Grant

Applications for the LAM Family Network (LFN) Travel Grant are available. https://www.thelamfoundation.org/Events-Co...

Women with LAM who are interested in joining us at LAMposium DC or LAMposium LA and need financial assistance with their travel expenses should apply today. Deadline for LAMposium DC is April 30.

SandraRC
moderator

LAM's Community Map

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.

https://www.rareconnect.org/en/community/l...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any doubt, leave me a comment below!

SandraRC
moderator

Clinical Practice Guidelines: Lymphangioleiomyomatosis Diagnosis and Management

The American Thoracic Society (ATS) and the Japanese Respiratory Society (JRS) have published new clinical practice guidelines for the diagnosis and management of lymphangioleiomyomatosis (LAM).

The guidelines, written by a 27-member multidisciplinary committee of clinicians and scientists, make five recommendations related to the diagnosis and treatment of the disease based on a systematic review of medical studies published through May 2015. The strength of the recommendations and the quality of the evidence supporting them were rated using the Grading of Recommendations, Assessment, Development, and Evaluation, or GRADE, approach. The guidelines also highlight research opportunities related to each of the recommendations.

Following link to the Learn section you can download this guideline:
https://www.rareconnect.org/en/community/l...

IrisBassi
moderator

Tell us about your experiences of travelling by air with oxygen

ELF would like to find out how to make air travel easier for people who require assistance with breathing, so that their lung condition does not cause any additional stress or discomfort,
ELF would like to find out how to make air travel easier for people who require assistance with breathing, so that their lung condition does not cause any additional stress or discomfort.

ELF has launched an online short survey on the topic and we have translated it into several languages. Further information on the project and the links to the survey can be found here:

http://www.europeanlung.org/en/news-and-ev...

The short survey is targeted to people who have a lung condition and require assistance in breathing and their carers. We would greatly appreciate it if you could disseminate it to people who might be interested, particularly over the summer holiday season. There is also a separate survey for healthcare professionals.

SandraRC
moderator

New study lays groundwork for potential new anti-cancer therapy

Identifying the cell of origin is crucial to understanding how a tumor develops and metastasizes and for developing targeted therapies. Researchers have found evidence supporting a lymphatic endothelium origin for angiomyolipoma (AML) and lymphangioleiomyomatosis (LAM), two related tumors with previously unknown cellular origins. Furthermore, the newly identified lymphatic endothelial lineage shows translational potential for pharmaceutical treatment.

Lead investigator Lucia Nieto Schuger, MD, of the Department of Pathology at The University of Chicago explained: "As both AML and LAM are tightly linked processes, they are thought to be different manifestations of a common process."

Read more on what researchers have found: http://medicalxpress.com/news/2016-06-grou...

SandraRC
moderator

For the recently diagnosed

If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?