LIPEDEMA: The Misunderstood and Misdiagnosed Disorder
Symptoms
In addition to the primary symptom of lipedema being a symmetrical buildup of abnormal and painful fat cells in the legs, arms, and trunk, causing a disproportionate body shape, there are numerous other symptoms.
01
Leg Heaviness
A common symptom of lipedema is a feeling of heaviness or fullness in the legs, particularly towards the end of the day. This sensation of heaviness can make it difficult to walk or stand for extended periods, leading to fatigue and discomfort. The heaviness is often described as a “dragging” or “pulling” feeling in the affected areas, which can worsen as the day progresses.
02
Easy Bruising
People with lipedema frequently experience easy bruising, even from minor bumps or pressure. This increased tendency to bruise is likely due to the fragility of the blood vessels in the affected areas, as well as the accumulation of fatty tissue that can make the skin more susceptible to injury. The bruises may appear larger and take longer to heal compared to those without lipedema.
03
Sensitivity
Sensitivity or tenderness to touch is another common symptom reported by individuals with lipedema. The affected areas, typically the legs and sometimes the arms, can become painful or hypersensitive to even light pressure or touch. This sensitivity can make everyday activities, such as wearing certain clothing or sitting for prolonged periods, uncomfortable or painful.
04
Pain
Pain is a prominent symptom experienced by most individuals with lipedema. While not a diagnostic criterion in most clinical guidelines, the presence of pain is a hallmark of the condition. The pain can come and go, affecting the areas with excess adipose tissue, potentially due to inflammation, which could explain the periodic flaring nature of the pain
05
Fatigue
Fatigue emerges as a prominent symptom experienced by individuals with lipedema. The vast majority of lipedema patients experience severe to very severe levels of fatigue, even though only one clinical guideline currently addresses “fatigue in the extremities” as a symptom
06
Swelling
Around half of lipedema patients report swelling. The swelling associated with lipedema is often described as a heavy, doughy feeling in the affected areas, which can worsen as the day progresses or with prolonged standing or sitting. This swelling is thought to be caused by the accumulation of adipose tissue, which can impair lymphatic drainage and exacerbate fluid retention
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“We must shatter the silence and amplify the voices of millions of women whose struggles and suffering have been overlooked for far too long by the medical establishment.”
The American Lipedema Association
FAQs about Research Publications
Does the American Lipedema Association Perform Research?
No. The American Lipedema Association does not directly conduct or fund research into lipedema. Instead, its primary role is to serve as a resource hub, connecting patients with existing educational materials, support groups, and medical professionals who specialize in treating lipedema. Additionally, the ALA aims to raise awareness about the condition and amplify the millions of voices of lipedema patients to authorities making decisions on our behalf. By disseminating available research-backed information, the American Lipedema Association strives to empower patients and facilitate their access to appropriate care and support networks.
What Resources does the American Lipedema Association Share?
When it comes to research-based information, the American Lipedema Association’s role is to guide patients to reputable sources and encourage them to consult with qualified medical professionals who can interpret and discuss the latest research findings and their implications for diagnosis and treatment. Examples include:
- The Lipedema Foundation is a well-established private foundation dedicated to funding lipedema research, with over $11 million awarded to date for studies across various disciplines related to understanding, diagnosing, and developing treatments for lipedema. As the world’s largest funder of lipedema research, the foundation’s mission and substantial financial commitment demonstrate its credibility and reputation in advancing knowledge about lipedema.
- Peer-reviewed medical journals and publications from respected academic institutions and research organizations.
- The “Standard of Care for Lipedema in the United States” published in the journal Plastic and Reconstructive Surgery in 2022 is an authoritative and comprehensive resource that provides evidence-based guidelines for the diagnosis, evaluation, and management of lipedema. This peer-reviewed publication, developed by a multidisciplinary team of experts, represents a significant milestone in establishing a standardized approach to lipedema care, addressing a critical need for healthcare professionals and patients alike. It is located here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8652358/
- Educational resources and materials from recognized lipedema experts, specialists, and treatment centers with established expertise in the field.
- Consensus documents from the Lipedema World Alliance.
What Publications does the American Lipedema Association Create?
American Lipedema Association publications focus on sharing patient stories, opinions, experiences, and survey results related to living with lipedema. These types of publications could include:
- Patient testimonials and first-hand accounts of navigating the challenges of lipedema, such as the diagnostic journey, managing symptoms, and coping with the condition’s impact on daily life.
- Opinion pieces and perspectives from patients, highlighting their views on topics like access to care, treatment options, and raising awareness about lipedema.
- Compilations of patient experiences, showcasing the diverse ways lipedema manifests and affects individuals, as well as their strategies for managing the condition.
- Summaries and analyses of patient surveys, providing insights into the common symptoms, comorbidities, and quality of life issues faced by the lipedema community.
By amplifying patient voices through these types of publications, the American Lipedema Association aims to raise awareness, foster a sense of community, and advocate for better understanding and support for those affected by lipedema.