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.
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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.
I am Nadin and I have LAM. I think the LAM foundation is a great nonprofit because after I was diagnosed; the LAM foundation was my doctor’s point of information and also my family’s. Since it is a rare disease, many doctors have no clue about it. I have learned with experience now, to print the basic information from their website and bring this to every new doctor that I have to meet! They practically teach you about the disease through their website, they connect you to LAM doctors so you can be evaluated, they share stories and connect you to other LAM patients, they gather money for new research and find a cure, they create awareness about the disease here and (slowly) abroad. I remember when the founder of the foundation called me to invite me to the LAMposium . I think she does this to every new patient that is diagnosed, and to me that shows that they really care about the patients. Also with the creation of the LAMposium, which is a 3 day event (and patients don’t have to pay anything, other than getting there) you get to meet the docs that are doing the research and ask tons of questions!
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.
I know about the LAM foundation because my little sister Nadin was diagnosed when she was 23 years old. After her diagnosis I learnt all I could in their web page. When my sister was in the hospital for three month because of several lung collapses, the book with stories about women with LAM help my family find hope during this hard time. The foundation is great directing you to the right people that help you deal with this devastating disease.
My sister Susan Mennillo was diagnosed with this rare fatal lung disease a few short months ago after being told it was asthma for a few years. She had an open lung biopsy and that is how they discovered she has it. It is cysts that develop in your lungs and eventually grow to the point where you wind up on oxygen and then eventually suffocate or have your lungs collapse, etc. Please pray that the foundation/doctors/scientists find a cure so that my sister will have a longer life than is expected with this disease. I pray everyday for my sister and others who are struggling with this that they may be cured. There are cures for cancer, heart disease, etc. WE NEED A CURE FOR LAM LUNG DISEASE.. PLEASE MAKE A DONATION/VOLUNTERR WHATEVER IT TAKES TO HELP IN THIS CAUSE...... Kathie Youtz - Susan's sister.
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 foundation has been a great place to source information about both the disease and how to carry on with it.
The LAM Foundation is an amazing grass roots organization that does an outstanding job of carrying out its mission to support LAM patients and provide funding for researchers to help find a cure for this disease. We are blessed to have such a strong organization for such a rare disease. The foundation continuously provides support for the LAM patients. The pace of science for LAM has been remarkable. This would not have been possible without the efforts of The LAM Foundation. The LAM Foundation truly is a model organization.
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.
I was diagnosed 16 years ago - before the LAM Foundation, before there was any kind of support anywhere. I was told I would live maybe 4 but certainly no more than 8 years. I certainly felt very alone and had no where to turn for support in this journey. The LAM Foundation has become a lifeline for women diagnosed with LAM and their friends and family. No longer does one need to feel so alone and hopeless. The LAM Foundation has been invaluable for so many through the wealth of easily understandable information, the listserve to connect women no matter where in the world we live, the visibility at conferences, the commitment to teach the medical community to recognize symptoms of LAM, the inspiration and funding to support research... I went from feeling i had a death sentence to feeling every reason to be hope-filled in living a long and meaningful life, doing what I love most. I am unspeakably grateful.
I was just diagnosed with LAM in Feb 2010. I went online to do some research and found this website. I sent an email asking for more information and they sent me a big book that was very very helpful. I have been able to get many questions answered from them and they have been the greatest help to me. They helped me to find a doctor here in my town that knew about this disease. My doctor had never heard about it. Since Feb I have had some great information and some great response to my questions. Thanks to the LAM foundation for all their help and support they give to me and all the others they help.
I was diagnosed with LAM in 1990. Sue Byrnes called me in 1995 and I felt such relief that there are others out there with this disease. She and Dr. McCormack and everyone involved with the LAM foundation is kind and helpful. My doctors rely on the research coming out of the LAM foundation.
After being told there was no treatment and no cure for LAM, I was devastated. There was so little, and such outdated information on the internet. When Sue Byrnes called me one evening it was such a relief to learn there really was help for me at the LAM Foundation! Where there still was no treatment and no cure, there was patient support and science working for the answers! Now almost 10 years later, I have participated in the LAM Foundations efforts and events and know that I am not alone in this struggle, that eventually an answer will be found! The staff is first class excellent~ I have called with many issues and problems over the years and they are always there with me until the matter is resolved. I thank God for this organization!
I was diagnosed with LAM in 1980, and fought a lonely battle with all kinds of complications from the disease. It was only three years ago that I learned of the LAM Foundation and signed up for the Listserv of patients. It was a revelation to learn about so many other women and their experiences with LAM. And the Foundation is always there to answer questions and give support. The annual LAMposium conference is a phenomenal experience, allowing patients access to researchers and doctors working on LAM, at the same time as providing a loving and learning experience for patients. I love this organization for its' ability to respond quickly to patient needs.
Sue Byrnes was the first person I talked with after receiving my diagnosis of Lymphangioleiomyomatosis (LAM). She calmed my fears, sent me information about the disease and about the Foundation and told me about the LAM patient Listserve. This is how my education about a disease I had never heard of began and continues to this day.
I was formally diagnosed with LAM, November 2009. I had Sue and the rest of the foundation walking by me side by side through the entire process. They helped me find a doctor who was familiar with LAM and get great care. They also are available at any time to answer my questions. They have made me feel less lonely, having such a rare disease. They make us feel like a great community. We have a site where we can talk to other women in all different phases of the disease, and from all over the world. To have a rare a disease, the LAM foundation is the best.
I was diagnosed with LAM in July 2006. This diagnosis changed my life. I was fortunate to have a pulmonary doctor that was familiar with the LAM Foundation. He gave me information to get in touch with them, which I did shortly after seeing the doctor. The LAM Foundation has been a great help to me, both emotionally and financially. I can't say enough good about this organization. Debbie
I was diagnosed with LAM following a 10 day hospital stay. Other than being short of breath, I had no reason to suspect I had anything wrong with me. The diagnosis of LAM shattered my world. Overnight, I was thrust into a world of full time oxygen use, a rare illness no one had heard of, and my doctors (former, now) were of little help. I googled LAM and came across the LAM Foundation. What a diffenence a search can make! Within a week, I was sent a packet in the mail, telling me many critical things that were known about LAM. More importantly, the Foundation sponsers a list serv grou- where women with LAM can communicate- for help, support, and information. This changed my outlook dramatically, as I was able to learn, and cope, and adjust.
The LAM Foundation is a God send for the women who have the rare disease Lymphangioleiomyatotis. They have financed Millions of $$ for reseach that was badly needed for this rare disease. In a short 15yrs much has been learned but still no treatments or cure. I have been able to go to the National Institute Of Health for testing and answers for my many questions only because the LAM foundation got it started. I have also been in a durg trial at the NIH. I have been to there convention in Cincinnate a couple of times but the most inportant and daily help is a chat room called the listserv for women with LAM. It has helped many of us get through many hard times. Susan Russo
I am 55 years old, live in Nova Scotia Canada and I am categorized as having Mild LAM and I am stable at the moment. I was diagnosed in 2004 after my lung collapsed twice. After a biopsy & surgery to attach my lung to my chest wall I was dumbfounded with the diaganosis of LAM. Fear, anger and disbelieve were just a few of the emotions I felt. My respirologist told me about a Natural History Study at the NIH & I signed up. I was contacted by the LAM Foundation & was sent some literature about LAM, found out there was an email community for LAM patients that is wonderfully comforting & informative. Thank you LAM Foundation & NIH for being there for us "Lammies".
When I was diagnosed with LAM in 2005 I was sent home from the hospital knowing nothing except that I had this incurrable lung disease. Those first couple of years were very lonely and very scary for me. Then I was connected with the LAM foundation. With an entire community of people working towards finding a cure and they connected with with other LAM patients. The LAM foundation has given me comfort, more hope and a new family that understands what I'm going through.
My Name is Flávia Patitucci Sobroza. I am 45 years old and have a 15 years old daughter named Úrsula. I was diagnosed with LAM in 1994 during my pregnancy but I am sure that LAM starts it's symptoms at least 5 years prior my pregnancy. In 1994 not much was known about LAM in Brazil. In 2002 I found The LAM Foundation and my life changed. I received lots of information about the disease, the Foundation's work, and also NIH LAM Protocol. I have attended LAMposium since 2003 Due to The LAM Foundation I learned enough about LAM to share all this information with other Brazilians LAM Patients who have never heard anything about LAM and mostly don't speak English.
On an otherwise ordinary day in early 2004 I visited an ER in Denver for shortness of breath. After 8 hours waiting for a radiologist to arrive who recognized the rather dramatic appearance of my CT scan I received the startling news that I had Lymphangioleiomyomatosis or LAM. More upsetting was discovering that LAM has no known cause, no effective treatment, is eventually fatal and that the patient population is so small I would probably seldom run into doctors who had heard of LAM - let alone meet other women with the disease. A call to the LAM Foundation in Cincinnati changed all that! The Foundation has helped me find medical care, educated me about LAM, and given me support at every turn. Most significantly, I have been given the opportunity to network worldwide with an amazingly courageous group of women with LAM that has kept me from feeling alone as I have learned to deal with the disease. I am extraordinarily grateful to all concerned with the LAM Foundation which deserves unending recognition and accolades.
I was diagnosed with LAM in 2003, and at the time, I had seldom been sick and never in the hospital except to have a baby! Overnight, my life changed, and The LAM Foundation was there to provide information, guidance, connection with other women who have LAM, leadership, research, fund raising, and, in a word, HOPE! They all work incredibly hard for LAM patients, to help fund research, to fund and encourage the formation of LAM clinics all over the world, educational outreach through pamphlets and networks of doctors and health professionals, and even drug trials - amazing for a disease that affects such a small number of women. Their annual conference, LAMposium, brings together LAM patients, researchers, doctors and health professionals for a time of absolute fun and also education, information and fund raising. I can't say enough good about the LAM Foundation!
I was diagnosed with this RARE lung disease almost ten years ago. How wonderful that the LAM foundation was already in place and able to answer many of my questions. Because of the LAM Foundation, I was able to connect with other "lammies" and this enabled me to feel empowered. I was not alone and I would do my best in this challenge like them! Sue and her staff welcomed me into the fold and I felt like it was going to be okay.
In November 2009, I had an incidential finding of cysts on my lungs. On December 23, 2009, following a lung biopsy the week before, the diagnosis was confirmed - I had LAM (or otherwise known as lymphangioleiomyomatosis). Since it is considered a rare disease, there was not a lot of information available and what was available, was not very positive. My pulmonologist referred me to the LAM Foundation the same day I received the official diagnosis. When I called on 12/23 to speak to someone at TLF, I was greeted by Sally Lamb. Within a week, I received an amazing amount of materials and information. The materials came in a two - three step process which was very helpful. Otherwise, I might have tried reading everything which would have only overwhelmed me more. Even after receiving the materials, people at The Lam Foundation are always available to me for questions that might rise or just to listen when I'm having a difficult day. They also have a LISTSERV that's available 24/7 for all patients which provides the opportunity to speak to others with the same disease. The LAM Foundation is amazing group of people and I feel very fortunate to have TLF available to me. The Executive Director even told us at LAMposium that she would happily accept losing her job if it meant that a cure was found and the foundation was no longer needed.
Since being diagnosed with LAM in 1998, I felt so alone. Hey, there are only 2000 of us diagnosed with LAM in the WORLD!! Don't you see how rare this women's only lung disease is? The LAM Foundation has brought us all together through their inception 15 years ago. This organization is a one of a kind!! It just isn't an office, it is a staff that makes sure each & every woman does not feel alone in this world. They keep us connected!!
I was diagnosed with LAM in May of 2010. It was a lonely road. My PCP read 2 pages from a website when LAM was suspected. About 2 weeks later, IT was the diagnosis. At that time I contacted the LAM Foundation and got a call back right away. My mind was eased quite a bit! They were encouraging and knowledgeable. It was suggested I connect other LAM women who further eased my mind. THIS IS SCARY, but with the support of the Foundation it's not so lonely.
