b'action! Youd be saving patients thousands of dollars andvolunteer at a Hospice, and graduated from high school. I stillinsurance companies millions as good compression is do sub-Q once a week; my health is steadier and Im happy.the best prevention for recurrent bacterial infections andIm concerned about the future, though, because theres no curehospitalizations. Once a person experiences cellulitis, theirfor my disease.lymphatic system is further damaged making them more susceptible to infections. A vicious cycle. My four year old wasalso diagnosed with primary lymphedema. It pains me to knowRAMON DORTAhe has a lifelong struggle ahead of him with little research andJefferson, GAno cure in sight.Greetings. My name is Pastor Ramon Dorta, In 2009 I traveled to Peru and contracted a flesh-eating bacteria which, through bad SHEILA JARVIS practice, completely destroyed my two arms. This bacterium at the Lake Wales, FL same time ate all my muscles and lymphatic system and every time I go to medical emergencies they do not know how to work with 20 years ago, I was diagnosed with lymphedema at age 49. I wasmy case since I am the only existing case. I currently live in Georgia very active before that and I walked three miles a day. I was lucky and I am a Christian pastor from the Hispanic area.to have good insurance and able to have compression stockings, wraps, nighttime wear, and a compression machine. I have had many infections and hospital stays, which included kidney failureCRYSTAL GARRETTand sepsis. I am now on penicillin daily so that I dont develop anyAtlanta, GAmore infections and DIE.My main reason for writing this is not only for myself but for My name is Crystal Garrett and I have primary lymphedema. all the people that have this extremely debilitating disease and havePrimary lymphedema is the localized swelling of the body caused no insurance. If they cannot afford all the garments that insuranceby an abnormal accumulation of lymph or in other words, body pays for they are shortening their life span and they are losing a lotfluid. I was born with this disease and it became visible whenof good quality life.I turned 14. It makes my left leg and foot look like I have a sprained ankle all of the time but, in fact, its a disease that causes a visible Before I had lymphedema I had a great healthy active life. Now deformity and many problems in my profession as Miss South I can barely walk out to the street and back and I have to sit down. Carolina 2007 and as a model/actress/singer.I cant go shopping, bowling, golfing, or doing any of the fun thingsIn my profession I am expected to look great always, and by great,I did before. Please work on a cure and include in Medicare theI mean by societys standards of beauty. My goal in life has always garments needed for people with lymphedema to keep thebeen to strive towards excellence in everything but having swelling down. People are getting worse everyday becauselymphedema in the entertainment industry makes that incredibly American government wont take care of their tax-payingchallenging. For example, I secured a modeling campaign for a big citizens. Thank you. brand name and hid my swollen foot well for a couple of photo shoots, except one. When the photographer noticed the swelling in HANNAH WALSH my foot, he pointed it out to the brand, and I was not asked to come back again. This disease affects my livelihood and my ability to St. Petersburg, FL provide for my family. I need a cure. I need those who could Growing up, the hospital felt like my second home. I dontaffect change on a higher level to care. I need your help.remember too much about all the procedures but do remember traveling to MD Anderson in Houston. I saw a lung specialist thereJON BENNETTand right away he knew I had a rare, incurable LDPulmonary Lymphangiectasia. He ordered a lung biopsy, which confirmed myHonolulu, HIcondition. I was in the hospital for seventeen days due to a pleuralMy mother has dealt with LE for years following cancer treatment. effusion from my lymphatic disease. As a result of this disease, While the expenses and lack of healthcare coverage hurt, the I developed a secondary conditionPrimary Immunodeficiency.emotional toll of being told that there are no treatments and that This has affected my life more on a daily basis. I was diagnosedinsurance has no intention to help is a much greater burden on us around six years of age. all. After attending a National Lymphedema Conference, I can say Over the next few years I missed a lot of school due to sickness. without a doubt that LE patients are the most impassioned I had to repeat a grade. Ultimately my parents and doctors decidedadvocates for support of those experiencing these complications. to pull me out of school to be quarantined. At the same time IThese conditions are truly lacking awareness in the medical began (IVIG) immunoglobulin therapy that consisted of six-hourcommunity and I hope that we continue to fight for greater transfusions every three weeks at the hospital. This helped stabilizeawareness and support for advocacy and research to help reduce my health and lasted for almost ten years until I was introduced tothe economic, physical, and emotional burden on patientssubcutaneous (Sub-Q)home therapy which changed my life! and those at risk.I was cleared to attend my junior year of high school. This has proved to be an exciting time for me. Recently, I got my first job, AN AMERICAN TRAGEDY 17'