Advice for newly diagnosed women with LAM

Worldwide LAM Awareness Month

Last Updated on 2nd June 2017 by Sarah and Justin

I know first hand how scary it is to get a diagnosis of lymphangioleiomyomatosis (LAM). It took me a long time to come to grips with it and get back to some semblance of normalcy in my life. But coping does get easier. And the women who contributed to this project have some really great advice.

Maria says…


Allow yourself to be scared, and angry, and to grieve (because we are only human and that is our first reaction) but then, arm yourself with the strength and courage of a warrior. If you can’t find it within yourself, our LAM sisters have enough to borrow!



Dina says…


Don’t be afraid. Stay as positive as you can. It’s so important to keep your mind strong along with your body. But its okay to have bad days. Just know you are not alone.




Meg says…


Be your own advocate. Don’t be afraid to ask for what you need – from professionals and from friends and family.





Sina says…


Life is not over. What are the things you really love? Just do them! Do them now!






Kristy says…


It’s not necessarily a death sentence, as we often read on the internet. There’s new breakthroughs everyday, and medications being researched.





Kelly says…


Pray. Seek information. Volunteer for studies.






Bree says…


Everyone is different, it affects us all in a different way. Keep in touch with your doctors for new treatment options.





Bre says…


In most cases, it is a slow decline, and we have already found a treatment.






Ine says…


It’s very annoying that you got the diagnosis but it’s possible to build a good and meaningful life. Probably in a different way than you had in mind. This process does a lot and it is important to get help.




Support women with LAM and help find a cure

Organizations that help women with LAM need your support! Click the below links to donate or learn more about the organizations that have helped the women who participated in this project.

WWLAM fundraising page for the The LAM Foundation (US)

LAM Selbsthilfe Deutschland e.V. (Germany)

Stichting LAM-Nederland (the Netherlands)

LAM Australia Research Alliance (Australia)

For information about all the global organizations that are a part of the Worldwide LAM Patient Coalition, click here.

Worldwide LAM Awareness Month (WWLAM)

2 thoughts on “Advice for newly diagnosed women with LAM

  1. Leah Bontia says:

    Hi. Im a 26 female newly diagnosed with LAM. I have this concern. Can i travel by air even if i have existing bullae. We dont have a LAM expert here in the philippines. And my doctor just want me to follow up with him after months. Then yearly. But i want to travel. Any suggestion pls. Thanks.

    • Sarah and Justin says:

      By “bullae” do you mean cysts? I have not heard that term before. I cannot answer if you can travel by air because that is really for a doctor to recommend. But I (Sarah) fly all the time. I use a portable oxygen concentrator to maintain a high enough oxygen saturation level. And I know a lot of other women with LAM who fly as well. Can you go see your doctor again to talk to him about it further? There is also some information about flying with LAM on the LAM Foundation website: Lastly, are you a member of the LAM patient Facebook page?

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