The Lipedema Manifesto is a comprehensive document designed to raise awareness and provide guidelines for managing and treating lipedema, a chronic condition characterized by abnormal fat accumulation in the legs and arms.
The manifesto outlines several key points:
Recognition and Diagnosis: Lipedema is often misdiagnosed as obesity, leading to inadequate treatment. Medical professionals must be educated about lipedema and its distinguishing features, such as the sparing of hands and feet, the presence of pain, and easy bruising.
Patient Advocacy and Rights: Empowering patients with lipedema to advocate for their health is not just a right; it’s a necessity. This includes the right to a correct diagnosis, access to knowledgeable healthcare providers, and appropriate treatment options.
Treatment Approaches: Lipedema can be treated using conservative and surgical methods. Conservative treatments include physical therapy, manual lymphatic drainage, compression garments, exercise, and anti-inflammatory diets. Surgical options, such as liposuction, can be considered in more advanced cases or when conservative treatments fail to provide sufficient relief.
Research and Education: Continued research into the causes and treatments of lipedema is essential. Education for healthcare providers and the public can help improve diagnosis rates and patient outcomes.
Support Systems: Building a supportive community for those with lipedema is important. This includes support groups, online communities, and access to mental health resources to help patients cope with the condition’s emotional and psychological impact.
Healthcare Provider Roles: A powerful and effective approach to care is recommended, involving primary care physicians, vascular specialists, dermatologists, pain management specialists, and nutritionists. This team approach ensures comprehensive care addressing all aspects of the condition.
You can visit the Lipedema World Alliance online for more detailed information on the manifesto and comprehensive resources.
LIPEDEMA MANIFESTO 2024
Lipedema is a global health problem that affects people worldwide, mainly but not exclusively women. The literature has shown both scarce and conflicting data regarding the prevalence of lipedema.
Lipedema is a chronic and potentially progressive connective tissue disease, often painful. It is a fat disorder that can cause severe deformity and disability and psychological and economic burdens.
Most health professionals are not fully aware of the disease or its signs and symptoms, causing people with lipedema to suffer for many years before they obtain a diagnosis and begin treatment. Lipedema can be mistaken for obesity, lymphedema, or a non-pathological disproportionate fat distribution.
There remains low public awareness about the health impact and advent of different fat disorders, which has a significant impact on the lives of people with lipedema and the stigma they face. Access to care is limited, leaving people with diminished and repressed identities and finding themselves blamed for their condition, including self-blame.
There is no definitive cure for lipedema, yet. However, it can be treated to reduce symptoms, maintain mobility, and improve quality of life while slowing potential disease progression. People with lipedema need access to high-quality multidisciplinary specialized centers and experienced health professionals in order to receive appropriate treatment; covering physical, psychological and social care.
There is a deep, unmet worldwide need to educate and support individuals affected by lipedema, including family members and caregivers, on this medical condition and the most effective self-management to improve their quality of life.
Medical research efforts to find a cure for lipedema and to optimize treatments lack sufficient funding compared to diseases of similar magnitude and severity.
Worldwide research should focus on patients’ quality of life, nutritional guidance, management of comorbidities, new technologies to reduce inflammation and fibrosis, earlier diagnosis to allow for early intervention and education, psychosocial support, as well as pre- and post-surgical protocols to improve care and optimize long-term outcomes.
Patient organizations and those living with lipedema must be “as troops” through which patients gain greater control over decisions and actions affecting their health” is a key theme within global health improvement strategies. The Lipedema Patients’ Associations play a crucial role in supporting people living with lipedema. The global Medical Societies, shifting the focus from the disease itself to people living with lipedema. We believe patients should be involved in determining research priorities.
Therefore, we support June 11th as World Lipedema Day and the Patient Associations signing below call for the attention of politicians, policy makers, health care professionals, researchers and the general public towards the needs of people who live with, or who are at risk of developing, lipedema.
We ask for increased funding for medical research, educational programs for healthcare professionals, and improved access to specialized care for those living with lipedema.
