b'Our 9-year-old daughter has lymphatic malformations on her left arm. Without good health insurance, her medical expenses could drown our familyin debt. ELIZABETH BASACA Portland, ORA cure would mean the world to me and to the thousands thatunless I had a diagnosis. I did a Google search and found an OTsuffer from lymphatic malformation and lymphatic disease. by the name of Rebecca Summers. She was out-of-network butWe are a large community with nowhere to turn. I would literallyI decided to pay the out-of-pocket cost up front for a consultation. do just about anything to help find a cure. I am tryingShe was very patient and thorough and she diagnosed me with desperately to raise awareness and research money. Lipedema. I called TX Vascular back and they had none of my info (referral, medical records) on file and did not specialize in the STACY DODSON disease. I now have OT, a vascular doctor, and a surgeon.Frisco, TX KATY JONESI am 46 years old and recently diagnosed with lymphedema andFort Worth, TXlipedema. It has taken me a year or so to find out what the mass was on my legs. The issue was 1) Finding a doctor who wasSurviving non-Hodgkins lymphoma twice has come at a price. knowledgeable about the diseases; and 2) Finding a doctor andChemo and surgery to remove lymph nodes for biopsy have therapist who was in network. The first doctor was an Ortho andpermanently damaged my entire lymphatic system. My newshe said the mass was inflammation caused by my knee. She gave24/7 job is managing lymphedema. Doctors, lawmakers,me a steroid shot and prescribed physical therapy. At the end and insurance companies need to know how REAL and of the therapy they advised it was not my knee but could bedevastating LE is!lymphedema and referred me to another Ortho who they thought might be knowledgeable but, nope, he wasnt. It has been mentally draining and I have cried many days and at one point gave upKATHY PHILLIPSbecause I felt defeated. Bulverde, TXI had to enlist the help of Cigna to try and find a provider becauseI have neck lymphedema secondary to throat cancer diagnosed in lymphedema did not show on their website. The representative2019. What a shock it was to learn that the pump which would help recommended I see a vascular doctor and provided me a list. At TXmanage it is not covered by Medicare! If only I had been diagnosed Vascular Associates they would not schedule an appointmentwith lymphedema one month earlier when I had private insurance AN AMERICAN TRAGEDY 40'