Psychosocial Support for Patients With Lipodystrophy

Kate Stratton, Program Coordinator for Lipodystrophy United, discusses the need for psychosocial support for patients with lipodystrophy.
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 currently available.
As Ms. Stratton explains, lipodystrophy is an underdiagnosed disease and research in the space is scarce, so community is important to these patients. To meet this unmet need, Lipodystrophy United hosts support groups for lipodystrophy patients to share experiences, gain knowledge, and build a strong support system. However, more resources are still needed for these patients to understand management of burdensome symptoms such as extreme fatigue, hunger, and mood issues. These symptoms require understanding and compassion from healthcare professionals and the families and friends of patients with lipodystrophy.
Chapters:
Intro 00:00
Psychosocial Patient Support 1:07
Challenges of Diagnosis 3:52
Understanding Patient Needs 5:06
Current Research 6:26