Understanding the Challenges of Rare Medical Conditions
Insurance companies readily understand how a severe back injury, traumatic brain injury, or progressive neurological condition such as Parkinson’s disease or Multiple Sclerosis can prevent someone from working. Other conditions, however, present far greater challenges when it comes to obtaining or preserving disability benefits. Rare, complex, or poorly understood illnesses often require a much more sophisticated approach to proving disability. In these cases, one of the most important aspects of a successful appeal is educating the insurance company about the condition itself and how it limits a person’s ability to work.
The Client’s Medical Condition
In this case, Robinson Warncke represented a client suffering from Mast Cell Activation Syndrome (MCAS), a rare inflammatory disorder in which mast cells—an important part of the immune system—inappropriately release inflammatory chemicals in response to otherwise harmless triggers. These triggers can include certain foods and medications, common odors, dust, fumes, weather changes, environmental conditions, stress, and even everyday sensory stimuli. The result is a wide range of debilitating symptoms that can fluctuate in severity and are often difficult for others to appreciate.
For years, our client experienced chronic inflammation-related symptoms, including severe fatigue, brain fog, headaches, gastrointestinal problems, food intolerances, vision disturbances, rhinitis, sinusitis, asthma, shortness of breath, nosebleeds, eczema, hives, flushing, itching, and swelling. Because MCAS is both rare and frequently misunderstood by non-specialized physicians, it took years before she finally received the correct diagnosis.
After her diagnosis, she diligently followed treatment recommendations, carefully controlled her diet, and structured her life to minimize exposure to known triggers. She had worked remotely even before the COVID-19 pandemic because it allowed her to better control her environment. Despite these efforts, her condition steadily worsened. MCAS flares became more frequent, migraines increased from intermittent to daily, and her fatigue and cognitive difficulties made it increasingly difficult to complete even routine work tasks. Eventually, she was forced to stop working and filed claims for disability insurance benefits.
The Challenge
Her disability claims were initially approved. Less than a year after beginning long-term disability benefits, however, Sun Life terminated her claim. The decision was based largely on a paper review conducted by a general internal medicine physician who never examined or spoke with our client before concluding that she was no longer disabled.
The reviewer’s report made it clear that he was skeptical of the MCAS diagnosis. He also largely discounted our client’s symptoms because they were “self-reported.” He characterized her as non-compliant because she had not returned to a neurologist – failing to note that the neurologist had dismissed her symptoms and failed to appreciate her extreme sensitivity to medications that are generally well tolerated by most patients.
The Appeal Strategy
On appeal, our strategy was simple: overprove every aspect of the claim.
We obtained comprehensive narrative reports from both her immunologist and primary care physician explaining the MCAS diagnosis, why it was well supported, how MCAS interacted with her chronic migraines, why her symptoms had progressed from intermittent to continuous, and why she could no longer perform the duties of her occupation. For rare and poorly understood conditions like MCAS, this level of physician explanation can be critical to overcoming skepticism from insurance company reviewers.
We also asked our client to maintain detailed daily symptom journals documenting her headaches, neurological symptoms, gastrointestinal flares, fatigue, and functional limitations. To provide additional objective evidence, we arranged for a comprehensive neuropsychological evaluation—the gold standard for measuring cognitive impairment. The testing documented significant deficits in attention, processing speed, executive functioning, and memory, and concluded that she was incapable of sustaining full-time work in a complex, cognitively demanding occupation.
The Result
Faced with this comprehensive evidentiary record, Sun Life reversed its decision and reinstated our client’s long-term disability benefits.
Why Building a Strong Administrative Record Matters
This case demonstrates the importance of building the strongest possible evidentiary record during the disability appeal process. Every available source of proof—treating physician opinions, objective testing, symptom journals, and witness statements—can play a critical role in establishing disability, particularly when the underlying medical condition is uncommon or poorly understood.
For claimants covered by ERISA, this is especially important because the administrative appeal is typically the last opportunity to submit evidence. If the appeal is denied, the administrative record generally closes, and you usually cannot introduce new evidence later in court.
How Robinson Warncke Can Help
At Robinson Warncke, our attorneys have decades of experience handling complex disability insurance claims involving rare and misunderstood medical conditions. We understand how to develop persuasive medical and vocational evidence, anticipate insurance company defenses, and build the strongest possible record before an appeal is decided. If your disability claim involves a complex medical condition and your benefits have been denied—or you are concerned they may be—contact us to discuss how we can help protect your rights.
