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EmmasIncredibles

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1 reviews

Review for Lymphatic Education & Research Network, New York, NY, USA

Rating: 5 stars  

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!

Role:  Volunteer