The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical, and patient communities by offering information, resources, and a worldwide network of hope and support.
Founded in 1995, The LAM Foundation is the global leader in the fight against lymphangioleiomyomatosis (LAM).
LAM is a rare and progressive lung disease that primarily affects women and has no known cure. Headquartered in Cincinnati, Ohio, The LAM Foundation provides support and education for women with LAM and their families, engages doctors and scientists to continue to learn more about the disease, and raises funds for continued research. In May 2015, the FDA approved Rapamune as the first effective treatment for LAM, based on research and patient engagement supported by The LAM Foundation.
Just wish the LAM foundation can assist us with portable oxygens even if it's used just for us to enjoy freedom of movement, like other people. We thank you for Sirolimus
Greetings Rose, We would love to explore how we can help you with oxygen access. Please email Erinn Williams at patientservice@thelamfoundation.org for assistance.
Not sure if I understood. Mrs Cindy said she has LAM for twenty or more years? No oxygen? I have LAM. Can a person live more than 20 years? Also, without supplemental oxygen? Also, life expectancy is much longer than I thought!!! After two years, of diagnosis I thought I had like a year or two left. I got COVID in December and got worse. In my walk test, I desaturate very quickly. I haven't started my Sirolimus, but I will!!! I am just very afraid to take the medication. But I will!!! I want to see my niece get a college degree, get marry and have kids!!! PRAYERS PLEASE!!!
@lilinurio8348 Thank you for reaching out. We are so glad you found us. Please fill out the form linked below, and our Patient Services team will get back to you privately via email: www.thelamfoundation.org/join-our-community/
Hello - We are here for you. Please register with the foundation so we can get your contact information to Erinn, our Patient Services Coordinator. She will reach out to you via email.
Greetings Zinia - We are so glad you found us. Please fill out this form, and our Patient Services team will get back to you privately via email: www.thelamfoundation.org/join-our-community/
I am Lam patient.. Since 5 years diagnosis.. I'm from Bangladesh. I want to living 😢😢😢 Plz help me.. Is it curable without lung transplantation? I use oxygen support. What is the treatment of this disease?? pls help me.. I want to living.. I want to living
No, there is no cure. There is a medication that slows down the progression. The name is Sirolimus (Rapamycin). I still have not started taking it. How you doing?
What can I do to help????? I desperately must do something. Almost one year ago My 30 year old granddaughter was diagmosed with this disease. Please tell me there is something I can do! Bobbie Mathewd
Good morning, Roberta. We are sorry to hear of your granddaughter's diagnosis. Please visit www.thelamfoundation.org/LAM-Patients-Family-Friends/Support/-Family-and-Friend-Assistance for more information. The patient and family services team would be happy to connect with you. They can be reached at patientservices@thelamfoundation.org.
But vaccinated can catch and pass Covid…. Why do you assume it’s passed from the unvaccinated? How can you know whether it’s passed from vaccinated or not?
Hi Carol, thank you so much for sharing your story. I also have LAM -mine was found in my uterus (I also donated my uterus to LAM research) during my hysterectomy in November of 2020 and I also have a small LAM lesion in my abdomen. As of now my lungs appear to be clear, but obviously that could change if the disease progresses. There are so many questions surrounding this rare disease and I have been feeling very anxious and scared since my diagnosis. But you are very inspiring and going forward I’m going to try and be more positive and hopeful. I know advances are being made every day. I hope you stay well and live a long and happy life with your 3 beautiful children. (Your mom is awesome too!) ❤️
Hello, I was diagnosed with LAM during a routine hysterectomy in November 2020. I am older than most people at diagnosis as I am 54- it was found in my uterus (and recently a LAM lesion was found in my abdomen) and I also signed consent forms to donate my uterus to LAM research. As of now I do not have any evidence of it being in my lungs. Obviously, this could change as the disease progresses. I have read many accounts of LAM starting in the uterus or found during routine hysterectomies like mine. I had strange uterine symptoms for years and years but I’m still not sure if they were attributed to LAM or the endometriosis that was found during my hysterectomy. I’m usually very private and don’t like posting personal stuff but I am posting this so that maybe it can help someone or offer some clues as to the origins of the disease. I feel like there are still so many unanswered questions regarding this rare disease. Thank you for your continuing research and support for LAM patients like myself.
Thank you, Drs. Frank McCormack, Nishant Gupta, and Vera Krymskaya for helping my family!! One wouldn’t expect a physician to help care for a patient across the ocean, but you did! We are truly grateful 💗
My friend was recently told that she had less than I year to live, she has both LAM and a central nervous system shut down type thing. I'm not ready to lose her and I don't how I'll live with that... these people live through this for years but with my BEST friend she won't be here anymore...
I was diagnosed with LAM at the age of 26. After my first five collapses I had surgery on my right lung. They ended up removing half my lung. After the surgery my right lung collapsed five more times before the left began collapsing. Being a mom of two I was angry, not knowing if I would be around to watch them grow up. It has been 15 years and I thank god for every day and every breath and for giving me the time to watch my daughter get married. God bless and stay strong.
my best friend was diagnosed with LAm recently, I'm devastated, I'm trying not to show her my emotions, (she doesn't need to see it) but it's hard. I'm hoping on the scientific breakthrough and sooner drug availability. It's sad that insurance companies are not very supportive with this. But please hang in there, I'm praying for all of you!
Hello. My name is Laurie and I too have LAM. I was diagnosed in 2000 when I was 19 years old, due to a collapsed lung. Since then I've had many more collapses(7 in total) and a number of surgeries. I am now 27 and I'm completely oxygen dependent. Over the years, my pulmonary doc told me that my lung function was slowly deteriorating. At my last appointment, last month, I was told that I'm down to 30% lung function. Everyday is a struggle but I do my best to not let it interfere with my happiness
i know a 27 yr old that is suffering with LAM. I know that if is was not for her son, she would have committed suicide. her son is the only person that is keeping her alive. i know that she is in a lot of pain because she talks to me about it all the time. i dont know what i would do when she passes. it will hurt me deeply. THIS IS NO JOKE. THIS IS A VERY SERIOUS DISEASE!!! THERE IS NO CURE FOR THIS.
