Born with Lymphedema, I have had many experiences less than ideal with those in the medical field. After so much confusion, I found LERN. I have learned so.much from the connections I have made with others that live with Lymphedema everyday! LERN is doing amazing things!!
LE&RN has commenced a very important mission. Lymphedema, both genetic and acquired, is severe and debilitating disease surrounded by an unusual social and medical stigma. There are only very few existing treatment options and virtually none in development. The only option is to increase the social, political, governmental, institutional and financial awareness, transparency and support for the necessary new treatments. LE&RN has managed in the past three years to increase the awareness for the disease and suffering patients with minimal resources. However, there is still long way to go to reach the same amount of broad public awareness, support and research as has been generated to support for instance the victims of Multiple Sclerosis. Lymphedema patients are in high need of new medical solutions and we all have to support LE&RN as much as we can!
Riku Heikki Rautsola, Ph.D.
As a board member and a parent of a child with primary lymphedema, LE&RN is THE organization that gives promise and hope to all those suffering with lymphedema and lymphatic diseases. Every day LE&RN is gaining ground in bringing awareness to lymphedema. Through this awareness and the raising of dollars to fund research, LE&RN is making a difference for all those affected by lymphatic diseases.
The Lymphatic Education & Research Network is doing incredibly important work. They are bringing awareness to an under-represented, under-discussed health condition (lymphedema) that impacts millions of people worldwide. They are raising funds to support medical research, in search of better treatments and, ultimately, a cure for lymphedema and other lymphatic diseases. The individuals at LE&RN are committed, communicative and conducting work of the utmost importance.
I came to know the word Lymphedema 9 years ago. I had been dealing with horrible bouts of infections on my legs and even cellulitis multiple times. When I tried to speak with doctors and other medical professionals about my legs, all they could do was blame it on my weight issues instead of actually taking the time to learn about the disease. It has been such a struggle to not only live with but teach others about this condition. I came across LE&RN earlier this year and it has changed my life. I became a member after reading about all that LE&RN is doing for "Lymphies" like me. I found that Kathy Bates was holding the first annual 5K in California this year, so I knew I had to be apart of it and flew from Colorado just to walk my first 5K and spread awareness for this disease that has been sheltered and swept under the rug for far too long. After years of feeling alone, I finally feel like I have a family who knows what I go through on a daily basis thanks to LE&RN. LE&RN is saving lives!
At 6 weeks old, our son was diagnosed with a rare lymphatic disorder called Intestinal Lymphangiectasia. As a result, he has a restricted diet, loses protein through the gut and has lymphedema in the abdomen and lower extremities. There is minimal research and no one had any answers for me in order to help my son. Through extensive searches, I came across LE&RN. Immediately I knew this was the organization that was going to help my son and those like him. Through the 4 plus years we have been involved research has been funded, symposiums are provided for patients and professionals and the diagnosis of lymphedema has been made known. In 2011, my son became the youth ambassador for LE&RN. He has been to Albany twice to advocate for those affected by lymphatic disorders with LE&RN staff standing beside him. Besides funding research and working towards a cure, LE&RN has given my son confidence, hope for a cure and the realization that he is not the only one suffering with lymphatic disorders.
I have watched this organization grow through the years and look forward to the work that is to come. I am proud to have my son as the ambassador and also being involved in the NY state chapter.
My daughter Emma was diagnosed with Primary Lymphedema from her toes to her belly at 18 months old, she's 7 now. At first we were thrilled to finally have a diagnosis, until we realized there was no where to turn for efficient help. We fought with our insurance company for 6 months before they would even cover the most basic treatment (MLD) and are still fighting to this day on issues such as compression garments. The lack of knowledge surrounding Lymphedema in the medical community is astonishing. As a mother, these kinds of issues were literally killing me-after being diagnosed with a panic disorder due to my daughter's disease and watching her suffer through 3 bouts of hospitalizations due to cellulitis, I knew if I didn't help to bring about change, no one would. That's when we found Lymphatic Education & Research Network. They are our saving grace, mentally and physically, in bringing about change to the disease that affects every decision we make, every day of our lives, in order to keep our daughter safe and healthy. In the past 2 years since we've joined forces with them, we've watched Lymphedema establish a name for itself. We've watched LE&RN fund groundbreaking research and helped them to pass a bill that was ignored for 12 years in the NYS Legislature. Their advocacy for all lymphatic diseases is top notch. LE&RN is the organization that is going to change the lives of everyone who suffers with a lymphatic disease for the better....they already are. LE&RN has changed our outlook of Emma's future, it looks brighter and healthier for us all and without them, I'm not sure where we would be. Lymphatic Education & Research Network-from the bottom of our hearts, we thank you for changing our lives!
My daughter was diagnosed with Lymphedema at age 11. She was told by her doctors she would just have to live with her swollen foot. It wasn't until she was in her early 20's, and decided to do her own research that she was able to get some answers. Those answers came from LE&RN. Through this wonderful organization she was able to get a better understanding of what was happening to her. She has since become very involved with LE&RN and wants to spread the word to help others who have Lymphedema know that there is help out there.
LE&RN has changed my life. I was diagnosed with primary lymphedema 16 years ago at age 11. The team of doctors who evaluated and diagnosed me told my parents that there was nothing they could do, even though the swelling might get worse. I went on for the next 12 years with no treatment or management, and every doctor I went to for varying reasons had no idea what lymphedema was and always told me to get an over-the-counter compression stocking at the nearest drug store. It was only when I started doing my own research that I found LE&RN. This organization introduced me to information, resources, and a world of fellow lymphedema sufferers that I had no idea were out there. They are 100% dedicated to spreading awareness about lymphedema and making it a relevant topic in the medical community. They have symposiums recorded and streaming live on their website featuring leading professionals in the field. Their social media accounts are always up to date and post interesting and exciting events/news. I have had the privilege of meeting the Director and a couple of other staff members—all of whom are some of the most compassionate and dedicated people I have ever met. They fueled a passion in me that I didn’t know existed, and have inspired me to join this fight against lymphedema. Everyone who is affected by lymphedema needs to know about this organization!
The Lymphatic Education & Research Network (LE&RN) has undergone a tremendous level of change over the past few years. LE&RN has always done an effective job of bringing the Lymphatic system to the forefront of the research community through its funding of such research. It has now added an educational component to its mission. In addition to funding lymphatic research, LE&RN has: created a tissue bank/patient registry to foster increased independent research; developed a webinar series to educate patients and doctors to become more aware of what is happening with lymphatic disorders; enhanced their website to provide more easy to understand information and resources so that patients do not feel confused and isolated; helped people to find their voice and not be ashamed about Lymphedema and other Lymphatic disorders; produced a world-class research journal updating doctors and researchers as to what is happening in lymphatic research; and so much more. LE&RN has done an incredible job of transforming themselves into a more relevant and important organization. They are definitely an organization to watch… they will change the world.