LE&RN was there when I realized my unexplained swelling was not going away but my doctor was not taking me seriously. With LE&RN's great information and assistance, I was able to advocate for myself and get the treatment I needed. The staff is wonderful and kind, and the organization as a whole is helpful and necessary. Love LE&RN!
LE&RN is our saving grace. They are the hope in this grim diagnosis. Advocacy, research and ultimately a cure while providing support-this is LE&RN. They give us strength to, in her words, "kick lymphedema's butt"
My only hope for a cure is Lymphatic Education & Research Network. They are going to change my future
This group helped me uncover what disease I truly had after years of misdiagnoses. Without the resources this group makes available, I may still be searching for answers.
This is the only charity of its kind and without it we would still be back in the dark ages without any social or political recognition or understanding of Lymphoedema and its effects on those of us profoundly personally (physically, socially and psychologically) impacted by Lymphoedema. Finding out about LE&RN seven months ago has given me hope that there may one day be a cure for the Lymphoedema that has utterly turned my once athletic life and day to day life upside down since 2015. Being able to cling to hope, knowing the dedication LE&RN has to myself and others with Lymphatic diseases, is in large part what has helped me overcome the deep depression I found myself in for months after diagnosis 16 months ago. Without LE&RN, research/cure funding would not exist as it now does, political/governmental initiatives would not exist, and those of us enduring dehabilitating lymphatic diseases would be without hope that we may ourselves benefit from a cure in our lifetime. LE&RN has made it possible for me to feel I can and want to stand up and fight the disease, and win!!
I have been a supporter of this charity for over 4 years now. This year they helped get NYS honor my 5 year old as a youth ambassador for Lymphedema and Lymphatic Disease and recognize Marh 6th as World Lymphedema Day! We need more awareness, support, and research to help our loved ones fight this disease! LE&RN strives for just that.
Thanks to LE&RN so many from around the world are able to come together and fight Lymphedema.
When I met the folks at LE&RN back in 2011, I felt alone and afraid of what my future held. Now 5 years later and I have met thousands of Lymphatic patients and with the help of LE&RN been able to direct patients to them for education and hope. Without Research our hope would be totally lost.
Thank you to LE&RN for continuing to provide hope, faith, education and research!!!!
LE&RN is an excellent source of education and compassion for lymphatic diseases. I've had Lymphedema and lipedema for most of my adult life and finally found a community that gives so much back to research and education. They also have wonderful people who volunteer for them
LE&RN has opened the eyes of the world. Lymphedema and lymphatic diseases are more common than anyone would like to believe. Their dedication to Education and research is phenomenal. So many changes in the lymphatic community have happened over ther years because of the research this organization helps fund. As a Lymphedema patient, I can honestly say they were a lighthouse in the midst of a storm. Thank you LE&RN!!!
I developed lymphedema years ago as a result of cancer surgery, lymph node removal and radiation. At first, no one knew what it was and then finally, I was one of the lucky people who had it properly diagnosed. At first I was scared and alone and knew no one else that had lymphedema. And then I was introduced to LE&RN and everything changed. Through this wonderful organization, I met other people who had similar questions and concerns as me. And as I started going to events and lectures, I learned more and more about how to help myself and others. And now every year I attend the annual LE&RN Walk and help to raise money for further research and awareness.
I was one of many with lymphedema who was misdiagnosed for years and years. I went from doctor to doctor, was put on diuretics for "water weight", and found that no one could help me with the enormous pain, stiffness and swelling in my lower legs and feet. I finally found out what I had only two years ago, at the age of 63, when I was introduced to a physical therapist with a specialty in treating lymphedema. I still felt very alone, until one night when my husband was flipping TV channels and happened upon Kathy Bates being interviewed about her own battle with lymphedema and the organization she was spokesperson for -- LE&RN. I was thrilled and immediately went on the website to sign up for the newsletter. I now hope to encourage and support others as co-chair of LE&RN's Florida Chapter. This is a very worthwhile nonprofit, and an organization which deserves recognition for the help and awareness it provides to both those who have lymphedema and those providing treatments and hopefully one day cures.
Being in the dark for so many years thinking I was the only one out there until I came across LE&RN. This organization has not only helped me find myself again but it has given me hope with the amount of research that has been going on thanks to them. I am now a Co-Chair for the Missouri Chapter and very proud to be part of this organization. I am no longer a lone.
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.