b'The scariest part is that doctors barely understand this disease and its impact. There needs to be funding for research and an increased emphasis on this disease and the lymphatic systemfor medical students and nurses.Jackie Barnett, Columbia, MOswollen ankles and legs, the real battle started with trying to getgrandmother who didnt have much and couldnt afford these treatment. The initial wrap therapywhich I had to ask for, stockings. To this day I still cant afford them. I work a full time job and only knew about from friends who had relatives with the sameand pay all my bills on my own. I dont have money to spare to pay conditionworks very well, but once the wrap is removed, thefor my necessary stockings.swelling returns. For ongoing treatment you need to wear compression garments, which includes socks and various under-garments. The coverage for therapy is limited, and the supplies areDEBORAH BAXTERnot covered at all. I am retired early because of this condition. Olean, NYI am a senior on a very limited income. I am still wearing theI was diagnosed with breast cancer in September 2016. I had asame special order socks from therapy of three years ago. I stillright mastectomy and right axillary dissection. In January 2020 my suffer with the painful swelling, and I cannot afford massages, right hand, fingers, and arm started to have swelling to the point or other at-home exercise equipment. my shirts were tight on my right arm and I had a lot of tightness, heaviness, and pain in my hand and arm. I went to see my AMY FAIRWEATHER oncologist and she recommended physical therapy. However, there is no one trained in lymphatic drainage within two hours of me. Wantage, NJ Im in desperate need of a cure for lymphedema.I developed secondary lymphedema in my left leg 12 years after having 29 lymph nodes removed during a total hysterectomy due CLARE CHOLLETto cervical cancer at the age of 31. This was just after my second daughter was born. Nobody ever mentioned, or even discussed,Elmira, NYthe possibility of lymphedema happening back then and it tookA little bump on my ear led to metastatic squamous cell skinyears to get a diagnosis. This disease needs more advocates andcancer and resulted in a radical neck dissection, removal ofmore coverage! There are not enough healthcare providers and the79 lymph nodes, radiation, and chemotherapy. The loss ofcompression garments and treatment options are antiquated! hearing was taken care of by a hearing aid. The quality of life issues due to having to do manual massage, wear compression garments, KAREN WARING and use a pneumatic pump nightlynot to mention physical therapy by a certified lymphatic therapist 45 minutes away and the Toms River, NJ time spent doing thesehave changed each day and will for the rest I am 78 years old living on a fixed income! Ive had lymphedemaof my life. In addition, I have leaking of fluid, swallowing problems, for years, and because I couldnt afford treatment its gotten worse! and issues of physical appearance. Since little research is done on I really feel like I will be dying soon! I really need help. Thank you! neck cancerand lymphedema, there has been little help so far. Please help now.LILLIANA MUNOZ PATRICIA CORNUTEDeming, NM Saratoga Springs, NYI am 23 years old and have primary lymphedema on my entire leftI was diagnosed in 2007 with primary lipedema, and becauseside. I have been getting treated for it since I was 14, but Ive hadit took so long to get properly diagnosed, I also have secondary this condition since I was 9. For five years I was sent to numerouslymphedema. They call my stage Lipolymphedema. It is a chronic specialistsfrom bone to bloodand the lack of knowledge byand progressive condition over most of my body, and I fight medical professionals about lymphedema caused mine to getevery day to maintain my mobility, which this condition tries its worse over time. Once I was being treated, we found out myhardest to take from me. insurance didnt cover the most important tool in managing this condition: the compression stockings. I was raised by my greatIts estimated that over 10% of the female population has Lipedema, AN AMERICAN TRAGEDY 27'