Dercum’s Disease is a rare, chronic medical condition characterized by painful fatty growths. This article explores how Dercum’s Disease can be recognized as a disability.
Understanding Dercum’s Disease
Dercum’s Disease, also known as Adiposis Dolorosa, is a rare disorder characterized by multiple, painful fatty tissue growths called lipomas. These lipomas typically appear on the trunk, upper arms, and upper legs, but can occur elsewhere. The pain from these growths can range from mild discomfort to severe, aching, stabbing, or burning sensations, sometimes worsening with movement or pressure.
The condition is progressive for some individuals. While the exact cause remains unknown, hypotheses include nervous system dysfunction, endocrine issues, or an autoimmune component. Beyond the painful lipomas, individuals with Dercum’s Disease often experience chronic fatigue, general weakness, and cognitive difficulties, sometimes referred to as “brain fog.”
Functional Limitations and Daily Impact
The symptoms of Dercum’s Disease can significantly affect a person’s ability to perform daily activities and work. Chronic pain from the lipomas can limit physical movements, making it difficult to sit, stand, walk, or even sleep comfortably. This persistent pain can also lead to hyperalgesia, where nerves become hypersensitive, making even light touch painful.
Debilitating fatigue frequently accompanies the chronic pain, reducing stamina and concentration levels necessary for everyday tasks and employment. Cognitive dysfunction, or “brain fog,” manifests as memory issues, difficulty concentrating, and impaired thinking, impacting work performance and the ability to manage personal affairs.
Painful lipomas, especially those near joints, can restrict physical activity and necessitate the use of assistive devices for mobility. The constant discomfort and often-misunderstood nature of Dercum’s Disease can also take a toll on mental well-being, potentially leading to depression and anxiety.
General Disability Determination Framework
Major disability programs, such as Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) in the United States, use specific criteria to determine if a condition qualifies as a disability. The Social Security Administration (SSA) defines disability as the inability to engage in substantial gainful activity due to a medically determinable physical or mental impairment. This impairment must be expected to result in death or to last for a continuous period of at least 12 months.
The SSA uses a five-step sequential evaluation process to assess disability claims. The first step determines if the applicant is engaged in substantial gainful activity. If not, the process moves to step two, which assesses if the impairment is severe enough to significantly limit basic work activities.
Step three involves determining if the impairment meets or is medically equivalent to a condition listed in the SSA’s “Blue Book” of qualifying impairments. If the condition does not meet a listing, step four evaluates if the applicant can still perform their past relevant work. Step five considers whether the applicant can adjust to any other type of work, taking into account their age, education, and work experience.
The Disability Application Process
Applying for disability benefits requires compiling comprehensive medical evidence to support the claim. Applicants need to gather all relevant medical records, including diagnostic reports, treatment histories, and notes from doctors. These records should detail the progression of the condition, reported symptoms, physical examination findings, and responses to treatments.
Detailed statements from treating physicians are important, as they provide insight into the severity and extent of the disabling condition, its duration, and how it impacts daily functioning. These statements should specifically describe functional limitations and how they affect the ability to perform work-related activities. Maintaining a symptom diary can also provide a continuous record of the condition’s impact.
The application can be submitted online, by phone, or in person. It is common for initial disability claims to be denied, with nearly 60% of initial claims denied due to insufficient medical evidence or documentation errors. If a claim is denied, applicants have the right to appeal the decision, typically starting with a reconsideration by the SSA. Subsequent appeal levels include hearings with an Administrative Law Judge and review by the Appeals Council.
Challenges in Proving Dercum’s Disability
Individuals with Dercum’s Disease may encounter specific difficulties when seeking disability recognition. The rarity of the condition often means many medical professionals and disability evaluators are unfamiliar with its complexities. This lack of awareness can hinder proper diagnosis and understanding of its full impact.
Pain and fatigue, central to Dercum’s Disease, are subjective symptoms challenging to objectively measure. There is no single definitive diagnostic test for Dercum’s Disease; diagnosis relies on clinical presentation and ruling out other conditions. The variability in how symptoms present and their severity among individuals also complicates the evaluation process.
Dercum’s Disease may sometimes be misdiagnosed as general obesity or other conditions, which can delay appropriate treatment and documentation. These factors collectively create unique hurdles for individuals with Dercum’s Disease navigating the disability determination process.