b'KAITLYN TANG ELIZABETH VASQUEZDublin, CA Pomona, CAMy journey with lymphedema started shortly after birth when I have tried endless dieting, even a gastric sleeve. I have lost 70 I was rushed to the hospital due to swelling of my hands andpounds and yet my legs and arms look the same, while I cannot legs. But it took several years for doctors to diagnose me withgrab an inch of fat of my waist. Im devastated that my legs will lymphedema. Living with lymphedema is a daily challenge. never look normal and now, approaching 50 years old, my I have protein-losing enteropathy and bilateral pleural effusionsstruggles have been since puberty. The dream of nice legs is gone which cause frequent respiratory distress, infections andforever. Please, please, realize that this is a real battle. I felt that hospitalizations despite being on daily diuretics and regularonce I lost the weight, my legs would magically look normal. I am albumin/IVIG infusions. defeated, embarrassed, and hopeless. Lipedema/lipodema is REAL!I miss a lot of classes at school. My feet and legs are too swollen to fit in most girls shoes or pants. My doctor says its like Im walkingVALERIA VINCENT SANCISIwith 20 pounds of weights all the time. Kids at school dont like to play with me because I cant jump as high and run as fast. Berkeley, CAIm so thankful to be under the care of many wonderful andIn July 2020 it will be two years that I have lived with lymphedema. compassionate doctors. After having numerous tests doneSix weeks after surgery I was on a hot hillside with a potential client including lymphangiogram, I was told my condition cannot befor landscape design. Got home, looked down, my whole right leg surgically fixed. I tried several potent drugs such as Octreotide was huge. My surgeon really was not much help except suggestingand Sirolimus hoping to help with my severe swelling and frequentI needed a physical therapist. The one she recommended was away diarrhea, but nothing has worked so far. Im participating in severalfor three weeks so I tried my GP and he referred me to one that onlyLymphatic studies and hope that soon there will be a cure for used her hands to drain, no advice, etc. Kept searching and found a this lymphedema! clinic that had more resources. They helped quite a bit and when wefinished the sessions, they gave me a machine with a sock that inflates.HANNAH TAYLOR But my own research helped me the most. Swimming, herbs, low RICHMOND, CA inflammatory diet get the best results. It has been very difficultto learn that lymphedema is a progressive disease I will have for I have been dealing with lymphedema since 2015, after my the rest of my life. It has forced me into premature retirement, as a hysterectomy for uterine cancer. In spite of physical therapy landscape designer, both being in the field and in front of a screen and the use of compression garments, the condition has notis detrimental at a full time schedule. I cant earn and I need to. Soimproved. I also have a compromised immune system, because ofI am living with financial stress, stress of managing my every day, myelodysplasia. A cure for lymphedema means that I may havethat when I wake up and stand, it is countdown for when it swellsanother 10 years added to my life. I have to wear and pay for out-of-pocket, expensive compression garments that limit me in hot weather. You get over-heated and swelling occurs. It has dashed my dreams and plans of travel (I am SUSAN TOGNOLINI a life-long traveler). Emotionally that has been one of the hardest Castro Valley, CA realizations and a big part of my identity.Our great nephew Grayson was unexpectedly born with lymphedema three years ago. As any new parents do, my nephewRACHEL WHITINGand niece sought information, but not about feeding times, bestStandish, CAtoys, and sleep schedules. They needed to learn about lymphedema, so that they could raise Grayson with as few limitations as possible.My son Lane was born in 2006 with a diagnosis of fetal hydrops, This little guy is limitless in smiles, curiosity, intellect, andwhich is fluid everywhere. The neo-natal doctor told us they could personality! However, he is limited physically by the compressionkeep him alive 3 days. Miracles happen and he is 13-and-a-half suit and gloves he wears every day. He will have healthnow. But when we left the NICU there was no diagnosis, just limitations. He will have some activity restrictions. That is whysuggestions of doctors to visit. One of those suggestions was a funding research is so important for him and for others wholymphatic specialist. After three months of searching I found a seek answers to overcome limitations. Please fund research for doctor to take my baby too. His office was 7 hours away. He has the Lymphatic Education & Resource Network. It is important forbeen a literal life saver. He gave us compression treatment options families like ours seeking answers and seeking an informed futureand dietary restrictions but said there was no research or moneyfor our loved ones like Grayson. in lymphatics so there wasnt much to look forward too. All the compression equipment, orthopedic shoes, etc., were not covered by insurance. Lane has been in out of hospital with pleural effusions, pericardial effusions, and has had two major lung surgeries and countless draining procedures from the edemaand fluid. The infusions he takes now cost $350 a month after insurance. Lane is a lively boy trying hard to breathe everyday. Finding a cure would mean a new and better life.AN AMERICAN TRAGEDY 11'