A Message from Sue Byrnes

Sue Byrnes
Founder and Mother of a LAM patient

As the mother of a daughter with lymphangioleiomyomatosis (LAM), I understand how you may be feeling whether or not you have a definitive diagnosis of LAM. Some of the information about LAM can be pretty grim, so I hope that I can ease some of your apprehension.  My experiences and relationships with women with LAM around the world permit me to paint a brighter picture than what you may find in literature.

People often ask me about my daughter when they learn that I started The LAM Foundation after her diagnosis. Fortunately, Andrea is doing very well, leading a perfectly normal life, doing anything she wants to do. We believe she has had LAM for 15-20 years. I am also in touch with LAM patients who have had LAM ranging from 25-50 years. Women with LAM love to prove doctors wrong about their prognosis. And I love telling new LAM patients about the women we have in our registry who are in their 70s - especially the ones who wear no oxygen. Many LAM patients, of course, choose to see themselves in that same setting! LAM seems to never affect any two women alike. Some have had several lung collapses, while others have never had that experience. Because something happens to one LAM patient, doesn't mean that it will happen to you.

I also enjoy sharing advances in LAM research. We've had three major breakthroughs in the first 10 years since founding the organization. These discoveries by LAM Foundation scientists have led to the first-ever LAM treatment trial, currently enrolling patients. The progress that has been made in LAM research is nothing short of amazing - it provides such optimism for the future! While LAM research is at the top of the list, offering support for our patients certainly doesn't take a back seat.  We provide educational materials for LAM patients and their families, and our annual LAM conference in Cincinnati is one of our most stimulating and exciting endeavors, for patients, physicians, and researchers alike. 

The LAM Foundation really cares about you. Be assured that we are doing everything in our power to be strong advocates for women with LAM and to find answers for this puzzling disease. The LAM Foundation staff and I are here for you, so take advantage of us! We make an effort to speak personally with every LAM patient, and would love to speak with you as well. Don't hesitate to contact us, even if you may be unsure of your diagnosis - perhaps we can point you in the right direction.

We encourage you to call us at (513) 777-6889 or feel free to email us at info@thelamfoundation.org. We hope to hear from you soon!

With kind regards,
Sue

To learn more about LAM, or to register with The LAM Foundation, please contact Patient Services at patientservices@thelamfoundation.org. 

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