Patient Perspective: Challenges of Lipodystrophy

Andra Stratton, President and Co-founder of Lipodystrophy United, discusses the challenges of lipodystrophy from a patient’s perspective.
Lipodystrophies are rare metabolic disorders characterized by the loss of adipose tissue. This leads to complications such as insulin resistance, diabetes mellitus, hypertriglyceridemia, and fatty liver. Lipodystrophies generally begin in childhood and have an underlying autoimmunity. The disorder can be genetic or acquired. Symptoms that may indicate a should be evaluated for lipodystrophy include thin arms and legs, prominent muscular veins, cutaneous fat around abdomen, and difficult to treat diabetes. Current management of patients includes cosmetic surgery, diet, and drug therapy for control of diabetes and dyslipidemia. Leptin replacement therapy is the only lipodystrophy-specific treatment.
The diagnostic odyssey for lipodystrophies is lengthy, with an average age of diagnosis at 36 years. Early diagnosis is important in starting treatment as soon as possible to attenuate disease progression. Children, specifically, may experience difficulties in school and social settings caused by fatigue, mood and behavioral issues, and hyperphagia associated with the disease.
Lipodystrophy United strives to bridge the communication gap between the patient community and the medical community. Through the organization’s services patients can gain an understanding of their disease to help them better advocate for themselves. Additionally, through their services, physicians and researchers can better understand the patient experience to better meet their unmet needs.
Ms. Stratton wants physicians to understand that their patients are not exaggerating their symptoms and that it is important to establish good communication and relationships. She also hopes for more understanding on a key symptom of lipodystrophy: hyperphagia, which is extreme, insatiable hunger. Further, more understanding is necessary on the progressive nature of this disease. As Ms. Stratton mentions, just because a patient is not currently presenting with severe metabolic symptoms, does not mean they will not later on. Developing individualized treatment plans that manage symptoms and delay progression is crucial in the patient care for lipodystrophy, as well as furthering research on the disease.
Chapters:
Lipodystrophy United 00:00
Lipodystrophy Overview 1:15
Signs and Symptoms 2:36
Current Management 3:44
Diagnostic Odyssey 5:43
What Physicians Should Know 8:04
Lipodystrophy at ENDO 2024 10:26