As the mother of a daughter with LAM, I am sensitive to the anxieties that you may be feeling at this time, whether or not you have a definitive diagnosis of LAM. Some of the information on 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 the literature.People often ask me about my daughter when they learn that I started the Foundation after her LAM diagnosis. Fortunately, Andrea is doing very well, leading a perfectly normal life, doing anything she wants to do. She has probably had LAM for over 12 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 72 year-old LAM patient who wears no oxygen and still plays tennis. Many LAM patients, of course, choose to see themselves in that same setting! LAM never affects any two women alike. Some have had several lung collapses, while others have never had that experience. Because something happens to another patient, doesn’t mean that it will happen to you.
I also love to share the advances in LAM research. We’ve had three major breakthroughs in six years and are currently conducting the first-ever LAM treatment trial. The progress that has been made is nothing short of amazing. It provides such optimism for the future! While 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 educational conference in Cincinnati is one of the most stimulating activities we initiate. It provides a wonderful weekend for both doctors and patients alike. Visit the Conference section on this website for more details.
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! I make an effort to speak personally with every LAM patient, and I would love to speak with you as well. Don’t hesitate to contact me, even though you may be unsure of your diagnosis - perhaps I can point you in the right direction. I am most often in my office, even during evening hours. I encourage you to call or to email me at the address below. I look forward to hearing from you!
Phone: 513-777-6889
Email: lam@one.net