b'MARIA HOOVER areas. Research funding for treatment and hopefully a cure would benefit the many needing relief from this illness. I hope Flagstaff, AZ Congress will give a top priority for this.From very young I was told I was meaty. Kids made fun of mybig arms and I thought I was muscular. Even though I was outside riding my bike and swimming, I couldnt lose weight. I beganNICOLE AWETIdieting at 12! I began menstruating at 9 and had terrible painfulOakland, CAperiods. I struggled through, never gave up, and after college I wasI was diagnosed with primary lymphedema at age 11. My doctors a Principal at 26! I was brave, confident, and achievement oriented.said there was no treatment, and it might get worse. I didnt receive I was even a body builder in my 20s! At 30 the weight began to betreatment until I was 23 years old when I did my own research to out of control. I tried every diet, even starvation! Id lose 15 or find an occupational therapist who specialized in lymphedema.20 pounds and gain that back and more. My self-esteemThe treatment helped, but if it had been treated and managed from plummeted and as my body grew, so did the fatigue and pain.the onset, my life and left leg would have been much different. Periods were the worst! At 42 the cysts were so large I had to have aInstead, I endured physical pain and discomfort, as well as social hysterectomy and gained 80 pounds! stigma during my adolescence.I went on a prescription diet and lost 100 pounds eating 800My lymphedema is under control now, but I am only 32 years old.calories a day, swimming laps 3 hours a week, and riding my bikeI worry about my health and mobility in the future. I worry about seven miles, three times a week. Sadly, once I added food back, the cost of compression garments, pumps, and night time I gained back 60 pounds! My self-esteem was gone. The accomplished garments that I need to manage my swelling. A cure would give woman I had been in my youth was gone. I could barely walkme hope for a healthy future and ease my anxiety about cost of from DDD and hip problems. I couldnt sleep due to pain. I wasequipment and arguing with insurance companies. A cure would told to lose weight and eat well when I barely ate! I learned I hadalso decrease my worry about the possibility of my son or future lipedema! I bought a swim spa and had liposuction paid bychildren inheriting lymphedema from me.inheritance. Now I eat very little (low carb), fast, and burn 3500 calories a week in the pool. My life is only about this diseaseat 62. But no more pain. EMILIE BECKLos Angeles, CADANA HUCK I developed lymphedema in my right leg almost two years after Scottsdale, AZ surgery for ovarian cancer. I wasnt warned of it, nor was it taken Diagnosed in 2018 at age 34 after a single lymph node removed seriously by my surgeon. I did my own research and insisted on for a melanoma diagnosis. Lymphedema rules my life: myseeing a lymph PT who confirmed it. Id love to find the gold comfort, my confidence, my ability to get up and go. standard of CDT, but its cost-prohibitive, even with excellent The 24/7 compression is a daily reminder of cancer and what insurance. So I keep my lymphedema managed like a part-time I have lost. I have two young kids and want to do everything in job: exercising, wearing compression, bandaging, pumping, massaging my power to stop lymphedema progression so I can be the mom every day, over and over again, just to keep it from progressing.I want to be for them. My world, my life, has become much smaller. The heaviness in my leg has become an overall emotional heaviness. A cureor even appropriate treatmentwould bring back joy, hope, and possibility. IRENE WESTWOOD Please, please, take this condition seriously. The medical Phoenix, AZ community should be as educated as every patient has to be in order to endure. And lymphies shouldnt have to suffer fromI was 35 years old, had two small kids, and had just started workinglack of treatment in the wealthiest nation.as a teatcher in elementary school, when I was diagnosed with cancer. After treatment I ended up with lymphedema in my left leg and it felt like a slap in the face. I can no longer work full time LINDSAY BENNETTas a teacher, my level of activity is much lower than before and San Diego, CAI have to rest several times through the day. Though I am cancer free, I am reminded of what it did to my body and my life every My name is Lindsay Bennett, and I am 28-year-old female who loves day for the rest of my life. sports and being active. I grew up playing sports. I played soccer, softball, tennis, basketball, lacrosse, football, rugby, and field hockey. You name it, I was trying it. I fell in love with field hockey when I RONALD AFDAL started playing in high school and got a Division 1 scholarship to play Concord, CA at Northeastern University. My dreams had come true until they were later shattered. I was diagnosed with lymphedema at the age of 23. My four-year-old great grandson has experienced lymphedemaNeedless to say, my life will never be the same. since birth, causing swollen hands, feet and legs. This necessitatesThis disease destroys me physically and emotionally. Every morning the constant wearing of compression clothing to minimize swellingI wake up with a big black night garment on and am reminded that and form some protection from injury and infection to the swollenIm not normal. Taking care of my lymphedema is a 24-hour-a-day AN AMERICAN TRAGEDY 5'