b'I am the third generation in my family to have this incurable disease. My grandfather was also bilateral like me. I also have an uncle and two first cousins living with lymphedema. LE has run in my family for over 115 years.Veronica Seneriz, Katy, TXLESLIE ZACHARY It made me go through a horrible and traumatic diagnosis process with an ill-informed doctor, and it makes me wear uncomfortable Austin, TX compression garments for 16 hours a day. A cure for lymphedema In May 2013 I was diagnosed with endometrial cancer at age 57. would be amazing.I had a complete hysterectomy and removal of 40 pelvic lymphLymphedema is a financial, physical, and emotional burden on nodes. The nodes were all clean. so many people. There is so little research into this disease, and By October 2013 I was diagnosed with lymphedema in both treatments have barely changed since it was first discovered. It is legs and torso. I wear compression garments day and night, 23/7,time to invest in the research we need to cure lymphedema.exercise twice daily, do self massage daily, and require professional lymphatic massage twice a week to manage the swelling. In 2018 the lymphedema spread to my left arm. I am still working full timeDOLORES GOMEZ-REYat age 64 and I dont see retirement anywhere in sight. My expensesHampton, VAfor garments and therapy run $25,000 a year. My insurance coversSeven years ago the swelling in my feet stopped going down.some of the cost of garments, but in a year when I go on Medicare,I noticed a small water blister on my ankle and thought it was an without private insurance the entire cost of these expenses is mine.ant bite. Two days later it burst but, instead of healing, my wholeA cure for lymphedema, a progressive, chronic disease wouldleg from the kneecap down was soon open as if it had road rash.change my life. I live in fear of not being able to afford the garmentsThe burning was horrible! It traveled to my other leg and water and therapy required to slow its progression. would leave puddles wherever I sat or stood. I finally went to the Millions of peoples lives would be transformed with a cure,ER where I was hospitalized for five days and put on six IVand access to compression and good medical care forantibiotics. With my legs wrapped to heal I was sent home inmanagement of lymphedema would save hundreds of millions bound hospice and wrapped my legs all summer.of dollars. Please vote for legislation to help find a cure for thisDid I mention I was seeing a doctor the WHOLE time who heartbreaking disease. would say, Yup, thats swollen! I was a hairdresser. Ive been homebound for five years now. I cant stand up straight as ANNA HAMBLIN lymphedema is in my entire body. My spine has been strained from water weight. The pain is unbearable but I deal every day with it. Hyrum, UT Im 60 and used to be active. Now, not so much. Please, please help. I was diagnosed with lymphedema after Stage 3 breast cancer andIts a crippling disease, especially when doctors know nothing about removal of several lymph nodes. It has been 11 years of dealingit. I want to live before I die, just walk upright. I can handle pain with the health care system to receive needed garments andbut I cant handle nothaving hope!treatment throughout the years. About five years ago I found a lymph therapist who also diagnosed lipedema in both legs.The compression garments are expensive and with insuranceCHRISSY LOWEallowances of only two garments every six months, I have toSouth Chesterfield, VAdecide which garments I need most. Legs and arms should notI personally know and love a child affected by lymphedema and be grouped together! This forces me to choose and leaves me withhave seen the stress that this condition has placed on his familydecreased maintenance and increased potential health problems. and loved ones. Without certainty of medical treatment or financial support, this leaves families in a vulnerable situation where theyIZZY SNYDER are trying to manage care, advocate for the child, and assume the financial burden of unpredictable expenses. The hope of a cure Guilford, VT would mean the world to those who live with this disease daily.Lymphedema causes me some amount of pain most days and limits the amount of time I can stand up. It makes me worry about my future and about passing down my genes to children if I have them. AN AMERICAN TRAGEDY 42'