b'Primary and *Non-Cancer-Related *LymphedemaLymphedema DiagnosisCancer-RelatedSecondary *Diagnosis: Tape Measure, Lymphedema Referral to TherapistPerometry, Bioimpendance *Early Lymphedema Detection Testing*Peri-Treatment Symptom Assessment*TreatmentPeri-Treatment Symptom Assessmentand Physical Exam*Sustained Self-Management*Pre-treatment Compression*Pre-treatment Education and Discussion* *Points of interaction with healthcare system.Figure 4: Various elements of patient/healthcare interaction. 37RECOMMENDATIONSCASE STUDIES:FOR THE FUTURE PATIENT VOICESEducation: Increase efforts to educate healthcarePeople who are living with lymphedema (LE) andproviders and the public about lymphedema (LE). lymphatic disease (LD) often feel isolated due to Research: Allocate more funds for lymphedemalimited awareness and stigma. Additionally, manyresearch to understand the disease better andresearchers who study the lymphatic system may have develop effective treatments. limited opportunities to connect with people with Policy: Advocate for including lymphedema codes inlymphatic diseases. To amplify these voices, we have shared these narratives highlighting the challenges electronic health records and promote thefaced by people living with lymphatic diseases.importance of early diagnosis.Whats Next? BONNIE: I was diagnosed with lymphedema in September 2015, and I am still trying to wrap my head The inference from the aggregate data andaround my Life with Lymphedema. Thus far, my future observations must entail an acknowledgment of thelooks bleak. I too have run into a diagnosis, but very marginalization of this patient population and its rootfew answers. Doctors dont seem to know how tocauses in insufficient medical education. We proposehelp. Treatments are few and expensive. Insurance, the following schema (Figure 4, above) to address theincluding Medicaid, doesnt want to pay for various elements of patient/healthcare interaction. treatment(s) and therapy, so you get worse untilIt is also apparent that rectification of medicalyou get bad enough to be hospitalized becauseeducation will be imperative. While all physicianthat will happen without care.groups are appropriate for this intervention, it isDARA: Most of my teenage years were spentparticularly relevant to consider the fields of familyhiding and feeling ashamed of the parts of my body practice, internal medicine, general surgery, breast andthat became increasingly deformed. It didnt reachgynecologic surgery, bariatrics, oncology, dermatology,its heyday until my senior year of high school.and cardiovascular medicine. A suite of educationalI remember lying in bed one day that spring.weeks programs can be created, both for virtual educationaway from graduation, and thinking that I couldnt go and tailored workshops to be presented at the largeon any longer. It was the deepest level of depressionnational conferences hosted by the organizations thatI have ever felt. I was at such a mental low that I could subserve the continuing medical and educationalnot bring myself to move. What was going to come of needs of these respective medical specialties. me if I was completely overtaken by this fluid? I felt like I was literally drowning in my own body.|National Indicator Report on Cancer-Related Lymphedema (LE)|17'