Three months ago I was confused and scared, knowing there was something wrong with my lungs, but not having any idea what. One doctor suggested it might be LAM, but it is a rare disease, and she didn't know. I looked up LAM on the internet and found all kinds of scary information, but I also found the LAM Foundation. I contacted them asking about their listserv that I saw mentioned, and the Patient Services Director responded to me within hours. Since then she has helped me find information, doctors, and other women with LAM to connect with. And all that before it was clear if I had the disease. Turns out I do have it. Found out a couple weeks ago. Some women spend years trying to get a diagnosis when they have LAM. I think my path to diagnosis was made shorter and easier (though not easy) by all the help I got from the LAM Foundation and from the ladies on their listserv. Now I get their newsletter and other information, and it is all tremendously helpful.
When I was diagnosed with LAM, I felt so lost and alone.. I did the online research and was filled with dread. I found one foundation dedicated to help people like me, the LAM Foundation, and I don't know where I'd be if not for them. I'm still very sick, on oxygen and in need of transplant -- but these people give me information and hope. They are always no more than an e-mail or a phone call away.
I'm a 25 year old LAM patient from New York named Lisa, facing a double lung transplant because my lungs are beyond saving at less than 30% function. The LAM Foundation has put me in contact with other women like me, and made me feel less alone. Although this disease is rare, serious, and fatal without a cure -- just having a support group and an amazing Foundation to turn to is invaluable. I couldn't imagine going through this by myself. We need to make the general public aware of LAM, because despite our efforts, it is still very largely unknown in the general public.
As a LAM patient, The LAM Foundation has provided me with a well balanced and well researched forum to get the answers I need about this very mysterious disease.
It is run by compassionate and hard working people who understand the seriousness of LAM and have dedicated themselves to finding the cure, if not theraputics, to prolong lives and imrove quality of life for us small group of women .
The team of Doctors and Scientists associated the TLF have delivered 3 major discoveries in a short period of time:
1) The genetic mutation responsible for LAM - which in turn opened the door to theraputics such as:
2) Sirolimus - The first approved drug that seems to stall progression
3) A non-evasive blood test to confirm LAM called VEGF-D
I will forever be grateful to all the love and commitment that comes from the Foundation. They are the best resource for LAM info.
It is truly remarkable how the human body can continue to keep on going with significantly reduced organ function. With lungs forever damaged from a rare, progressive disease, it is a matter of time when lifestyle must change to accommodate the daily struggle to breathe. Having knowledge that an organization exists that will help with the numerous transitions once being diagnosed with LAM, is a tremendous tool for both health care provider and lay individual alike. With no definitive treatment or known cause, treating a woman with LAM can be quite a challenge for even the most seasoned practitioner. The LAM Foundation offers the most current and updated findings to help steer the patient and physician in the proper direction. A priceless resource that might have never been without the dedication and willpower of it's founders and staff. Dealing with the symptoms of LAM is akin to being in a small boat on a stormy sea; the LAM Foundation provides a beacon and safe harbor for those affected. Great strides have been made in recent years with regards to diagnosis and treatment of LAM. This progress would not be happening without the foundation.
The LAM Foundation has guided many of us and our families through extremely difficult times. I don't know how I would have coped with this disease had the Foundation not been established. The staff are fantastic and the doctors who research the disease have given me and other women with LAM so much hope. Just saying "Thanks" to all in the Foundation will never repay my debt to them.
The LAM Foundation is different from any thing I have ever been involved with. Being a LAM patient was not something I would have ever chosen for myself. Having LAM has been difficult to say the least. I found out about the Foundation after 2 lung collapses and surgery to repair my lung. The doctors told me I had the disease, but, they didn't know anything about it, and they would have to "check into it". I went home and found the Foundation on the internet. Within 1 hour I was speaking with the woman who founded the organization, Sue Byrnes. She spoke to me with such caring and compassion. She relieved many of my fears. I had been given some misinformation. Within 2 weeks I was seeing doctors that worked closely with the Foundation. This was in 2001. Ever since then these amazing people have helped me time after time with no regard to their personal commitments. When I have needed their help, they step up time after time. From phone calls when I am hospitalized, to actual rides to the hospital and staying at my side until my family could arrive. To me, these acts of kindness are above and beyond the call of duty. That is why I believe the LAM Foundation has been, and continues to be the most amazing group of people I have ever been privileged to call my friends. I know 24/7 they are working to find a treatment, and, or a cure. I also believe that the day will come when they succeed. Thank You, Barb Turner
The LAM foundation is a wonderful non-profit organization. Most importantly, it provides emotional support and A BREATH OF HOPE for those of us with this disease. It also funds LAM research, and provides education to medical professionals and patients about this rare disease. HOPE is the kind and calming words of Sally Lamb on the telephone. HOPE is being able to connect with other patients. HOPE is knowing that this organization provided leadership and funding that led to the first clinical trial of treatment for LAM. HOPE is LAMposium, an annual symposium for both patients and researchers. It provides a forum for researchers to share their progress and make new plans. It provides patient education, and a place for patients with a rare disease to meet someone else with that disease. Patients meet researchers, researchers meet patients. It is encouraging for young researchers to meet a patient that says, "I will pray for your success". It is encouraging for patients to see the time and energy that researchers put into their work. HOPE is education for medical professionals, because sadly, many physicians have never even heard of this disease, so it often is not diagnosed or is misdiagnosed. A breath of HOPE - the LAM foundation.
The LAM Foundation was established to spur interest and raise funds for medical reasearch to fund a cure for Lymphangioleiomyomatosis. I am so thankful that they began this process 15 years ago! I was diagnosed a year ago and they have been a credible, reliable source of information to me. They are doing a wonderful job of educating the medical community and raising awareness of this rare lung disease.
A trip to the ER back in June 2008 is what led to my learning about the LAM foundation. I went to the ER thinking I had gall stones only to discover I had a collapsed lung. My family and I wanted to know why - I wasn't in an accident -I had never had any issues with my lungs before. If it wasn't for the LAM foundation and their efforts to ensure doctors and pulmonologists know about this disease I may have been sent home without any real diagnosis or treatment. The pulmonologist had no other patients with LAM but knew that the recommended treatment was a pleurodesis to prevent future lung collapse. The LAM foundation made it so I did not have to suffer thru multiple lung collapses and trips to the ER and they provided me with information about the disease. Six years prior to being diagnosed with LAM I had emergency surgery to remove my kidney due to AMLs which I know now have a correlation with LAM. Again, the LAM foundation was instrumental with providing the information, support and medical contacts I needed and I feel truly lucky that the LAM foundation exists. What they have done in such a small amount of time is truly awe inspiring. The women they have helped and the research they are responsible for -it is priceless.
I was diagnosed with lymphangioleiomyomatosis in September, 2007, shocked, confused and scared. My doctor told me to contact The LAM Foundation as soon as I could. When I called, they were so kind, understanding and KNOWLEDGEABLE! They sent me a LAM Handbook and a book entitled "Personal Journeys", a collection of stories written by LAM patients about their LAM experience. I learned so much about my disease and how to manage the different aspects of it. I also learned of a clinical drug trial that was underway called the MILES trial. Thanks to the financial support of The LAM Foundation, I was able to enter the study as soon as I could and stick it out for 2 years. I am SO thankful that The LAM Foundation exists to fund research, provide education and raise awareness about LAM. They provide us with pamphlets and booklets about LAM that I regularly bring to doctor's appointments or the hospital to help educate the medical community. By sending me posters, pamphlets, LAM bracelets, key chains, a DVD and the ability to open up a bank account, I was able to put on a successful fundraising event to raise much needed money for The LAM Foundation mission of research and education. Finally, one of the most important gifts that The LAM Foundation gives us is HOPE: hope for a treatment, hope for a cure, and hope that no LAM patient will ever feel alone.