b'clinician, others might prefer a deliberative processself-manage their medical difficulties is essential to and shared decision, and still others might prefer supporting these patients well-being and reducingto drive the decision-making process after receivingthe risk of serious complications. Clinicians playinformation from the clinician. These preferred rolesan integral role in educating patients and their can change based on the clinical situation and type ofcaregivers on how to prevent, recognize, and manage decision. For example, a patient might prefer to makecomplications of their lymphatic disease. To enable decisions about when to time imaging or laboratoryself-management, providers should strive to learntests, but they might defer to the clinician on whichfrom patients how their diseases most commonlytests to perform. Patients with lymphedema andaffect their health and quality of life. In doing so, lymphatic diseases often lack high-quality data toclinicians can tailor guidance and recommendationsinform decisions. Often, the only evidence comes to the most pertinent medical challenges for that from preclinical animal models, case reports, and caseunique patient. Patients with lymphedema and series. In these situations, it is imperative that clinicianslymphatic diseases often require multidisciplinaryprovide information about what is known, what iscare, and clinicians can also support self-management unknown, and how to measure the success of theby helping patients navigate consultation and referrals treatment. For example, clinicians might help patientsto other specialists. make a list of three things they hope a treatmentResponding to Emotionsmight change, such as swelling, mobility, pain, or leakage. Then the clinician can discuss the likelihoodPatients with lymphedema and lymphatic diseases that a proposed treatment would affect theseexperience emotional distress because of theirimportant outcomes. As a field, we need moredisease as well as the reactions of others in societyevidence to guide diagnosis, treatment, andto their disease. Patients can experience grief, anger, management. In the absence of this evidence, patientshelplessness, and stigma 201 . Additionally, these require detailed and transparent communication topatients can experience anxiety and depression that inform decision-making. Clinicians should also beare exacerbated by their clinical experiences. Clinicians transparent about their uncertainty related to decisioncan acknowledge these emotions by staying alert for making and their rationale for suggesting certainovert expressions of emotional distress, as well as treatments over others. subtle cues. When addressing these emotional concerns, clinicians can use open-ended questionsBuilding Relationships that provide space for the patient to elaborate onPatients with rare lymphatic diseases who face longtheir emotional distress. However, not every patient diagnostic odysseys are often referred from providerwill want to discuss their emotions, and some patients to provider before they reach an accurate diagnosis. prefer to focus on scientific advances and updates on In the process, the rarity of their presentations maynew treatments. Clinicians should follow the lead of lead providers to dismiss or diminish these patientstheir patients so they feel supported but not pressured concerns, which can engender mistrust in theto talk about their emotions. Clinicians should alsohealthcare system and disbelief that any provider willrely on other psychosocial professionals to provide be able to help them. Therefore, providers caring foradditional support for these patients. Clinicianspatients with these conditions can benefit patientsmight support these services by normalizing the affected by these rare diseases by striving to buildemotional struggles inherent to chronic disease and strong, trusting relationships and demonstratingdestigmatizing the role of mental health professionals.compassion and humility. To foster a therapeuticSupporting Hopealliance with these patients, providers should striveto demonstrate kindness, concern for the patient, Lymphedema and lymphatic diseases are lifelong and reliability.Many patients struggle to find clinicianschronic conditions with limited treatment options. who will commit to their care, and clinicians canMany patients have heard from multiple clinicians, strengthen these relationships by demonstrating There is nothing I can do for you. As such, patients that they will be there for the patient, whether might lose hope that they will ever have improvement they have effective treatments or not.Providing ain their symptoms. While clinicians should be openconsistent, reliable voice of support and under- and transparent with their patients about realistic standing to patients with rare diseases is key tooutcomes, clinicians can still support their patients building meaningful relationships that can support hopes. First, clinicians should recognize that patients the patients health and well-being.can hold hopes for multiple different outcomes, rather than only being hopeful in a vague, general sense. Enabling Self-Management Clinicians can address this breadth of hopes by Patients with lymphedema and lymphatic diseases willdirectly asking what the patient is hoping for, or what often be affected by their disease for the duration oftheir goals are 205 . Clinicians might then be honest their lives. As such, enabling patients and families toabout hopes that are unachievable while directing | Standardized Approach for the Diagnosis and Management of Lymphedema (LE) and Lymphatic Diseases (LD)|43'