b'MARJORIE YESLEY flats. And there isnt anything I can do about it. No exercise, pill, diet, surgery or therapy can reverse the damage caused by decades Blue Hill, ME of untreated Primary Lymphedema. Living and coping with lymphedema for the past 15 years hasSymptoms were present when I was a child, but were usually been an experience Id prefer to have missed. Diagnosed with dismissed or a diet was prescribed. I only received a definitive LE four months after surgery for breast cancer, with both armsdiagnosis in my late 40s but, by then, the damage was done. swelling and extremely painful, I began thrice-weekly manualTreatment was assigned: compression, compression, compression! lymph drainage sessions. Even with the relief these treatmentsOtherwise, Im resigned to living with this exhausting, embarrassing,offered, I soon found that I could no longer lift or handle the boxessometimes painfulbut always-misunderstoodcondition.of music that were integral to my job in a music library. I also could no longer play or teach the piano because of the pain travelingThanks to LE&RN, theres a chance that lymphedema and related through my arms and chest when I physically pushed the pianoconditions will be (cured?) (eradicated?) (understood?) in my keys. (I started piano at age four so this has been horrible for me.) lifetime. I support LE&RNs efforts, contribute what I can, pray. I was classified as permanently disabled and could no longer work. Now Im asking Congress to increase funding for research. Now, 15 years later, I also cant shovel snow or lift my grandchildrenWhat would you do if you were in my shoes?or rake leavesor do any movements that involve some pressure or resistance, like washing windows. I still wear compression sleeves every day and have MLD treatments every month. Although myBETH MEYERlymphedema symptoms are now more under control and tolerableKensington, MDthan originally after my mastectomy, I continuously wish for aIn 2013, our familys life changed dramatically. My 9 year-old better, more permanent treatment or cure. And, at 72, my time isdaughter Sarahs ankle swelled dramatically. A scintigraphy at running out! Research is critical to easing the lives and bodies soChildrens Hospital, DC. confirmed she had primary compromised by this disease; mine is just one of them. Pleaselymphedemano lymph node activity in her right leg and foot.help to make lymphedema research possible.The DC specialist gave no guidance so we got a second opinion three month later in Cincinnati. We learned that lymphedema is a ZALEE HARRIS chronic condition, maintained through MLD and hose. Sarah has Hughesville, MD hose, a night garment, and a pump she uses nightly. Her right leg In August, 2014, I was diagnosed with Stage III IDC Breast Cancerlooks double the size of her left. in my left breast. I elected to have a double mastectomy. A fewSarah has lobbied on Capitol Hill for the Lymphedema Treatment months later, I began having terrible pain around and under bothAct (LTA). She inspired a bill for Maryland Insurance to cover armpits. I was diagnosed with OT Stage II Lymphedema in bothcompression garments that became House Bill 847. She was arms. I was told that there is no cure. I will have to wear verticalnominated as a Rare Disease Teen Advocate in 2018.and horizontal compression garments 24-hours a day for the rest ofIn 2018, my older daughter Hannahs left leg looked swollen the day my life. The pain is so unbearable that I must change into thebefore a vacation. At home, her diagnosis of primary lymphedema vertical garment within 20-minutes of being vertical. I use Fentanylwas confirmed. Recent testing shows Hannah has no lymph node Patches and brand Lyrica for chronic pain. I see an OT Specialistactivity in her left leg and foot.once every six months. I cannot lift, pull, or tug anything that eitherOur family lobbies for LE&RN and the LTA. Hoses and massage weighs or has a torque over five pounds.just maintain the disease; they dont cure it. Lymphedema takes I am 62 years old. Medicare recently informed me that I have a toll on self-esteem, quality of life, and can lead to death. Education,to pay 20% on garments and equipment prescribed to manageresearch, better insurance, and eventually a cure are imperative.Lymphedema that I am measured for every six months.I currently owe $4,000.00 (20%) for three customized garments, which I cannot afford to pay. I cannot dress or undress myself. MICHAEL PROKOPOWICZI need help bathing. I cannot comb my hair. I cannot put onBaltimore, MDsocks and tie my shoes. A cure?My name is Michael P. and I am 10 years old. At the age of sixyears old, I was diagnosed with Kaposiform Lymphangiomatosis.HANA-BASHE HIMELSTEIN It is a really big word so I just say KLA. It is also very rare but it Baltimore, MD affects kids like me at my age. It can make me really tired andI have to be careful when I play because I bruise a lot. The doctors Shoes. and scientists do not have a cure yet but with me telling my story What really sets me apart from other womennormal womenisand sharing what I have been through with others I really hopemy shoes. Most women my age have a substantial collection of foot- that the experts will work together, get lots of funding and research wear for every occasion: different colors, patterns, heights, styles.dollars, and help me and kids just like me. Please know that we are Fancy. Basic. Athletic. Choices. Not me. I own one pair of slip-ons.all #bettertogether and that we need to put #puthopeintoaction. Years of damage from stagnant lymph created a cuff above my ankles, making it impossible for me to wear ordinary pumps or AN AMERICAN TRAGEDY 21'