Can You Get Long-Term Disability for Moyamoya Disease? What Patients and Families Need to Know

The short answer: yes — moyamoya disease can qualify you for long-term disability (LTD) benefits. But because it’s a rare condition, insurers often don’t fully understand its severity, and claims are frequently denied on the first try. This guide walks you through everything you need to know: what moyamoya disease is, how LTD insurance works, why claims get denied, and exactly what steps you can take to build a winning case.

1. What Is Moyamoya Disease?

Key fact for your claim: Moyamoya is listed as a rare disease by the National Institutes of Health (NIH) and the National Organization for Rare Disorders (NORD). Its rarity does not make it less disabling — but it may require extra documentation to educate your insurer’s medical reviewers.

Symptoms That Can Affect Your Ability to Work

Moyamoya affects people differently depending on which arteries are involved and how far the disease has progressed. Adults most commonly experience strokes or TIAs (transient ischemic attacks), while children more often develop recurrent mini-strokes. The lasting effects of these events are what drive most LTD claims.

• Cognitive: Memory loss, slowed thinking, difficulty concentrating or multitasking
• Motor: Weakness or paralysis on one side of the body (hemiparesis or hemiplegia)
• Speech: Aphasia (difficulty finding words) or dysarthria (slurred speech)
• Fatigue: Chronic exhaustion that limits the ability to sustain an 8-hour workday
• Headaches: Frequent, severe headaches that disrupt attention and task completion
• Seizures: Unpredictable episodes that create safety risks and cause missed workdays

Even after surgery (such as a bypass procedure to improve blood flow), many patients live with lasting neurological deficits. Surgery slows progression — it does not cure the disease.

2. How Does Long-Term Disability Insurance Work?

Long-term disability insurance replaces a portion of your income — typically 60–70% — when a medical condition prevents you from working. Most people access LTD coverage through their employer as part of a group benefits package. Others purchase individual LTD policies on their own.

The “Own Occupation” vs. “Any Occupation” Split

This is one of the most important distinctions in LTD law, and it catches many claimants off guard. Almost every LTD policy contains two different definitions of disability, applied at different points in your claim:

1. Own Occupation (First 24 Months): You must show that you cannot perform the main duties of the job you held when you became disabled. This is typically the easier standard to meet.
2. Any Occupation (After 24 Months): You must show that you cannot perform any job for which you are reasonably qualified by education, training, or experience. This is a much harder bar — and the most common point where benefits get cut off.

ERISA warning: If your LTD coverage comes through your employer, it is governed by a federal law called ERISA (Employee Retirement Income Security Act). ERISA imposes strict deadlines — typically 180 days from a denial letter to file an appeal. Missing this deadline can permanently end your right to benefits.

3. Does Moyamoya Disease Qualify for Long-Term Disability Benefits?

Yes — moyamoya disease can absolutely qualify for LTD benefits, but the key is demonstrating how the condition limits your specific ability to work. A diagnosis alone is rarely enough. Insurers want to see objective, detailed medical evidence connecting your symptoms to concrete functional limitations.

The following functional impairments are most commonly documented in successful moyamoya LTD claims:

• Inability to maintain concentration, pace, or persistence throughout a full workday due to cognitive impairment
• Motor weakness limiting sitting, standing, walking, reaching, or handling objects
• Communication-related deficits (aphasia, dysarthria) that prevent job duties requiring talking or writing
• Fatigue severe enough to prevent sustaining an 8-hour workday, even at a desk job
• Seizure risk that creates safety restrictions or unpredictable absences
• Documented ongoing risk of stroke or hemorrhage that precludes physical or high-stress work

Neuropsychological testing is one of the most powerful tools in a moyamoya LTD claim. It objectively measures cognitive deficits — like memory loss and processing speed — that are hard to “see” on a standard exam. If you haven’t had formal testing, ask your neurologist for a referral.

4. Why Are Moyamoya LTD Claims Denied?

Denials are common — even for claimants with severe, well-documented conditions. Knowing why insurers deny moyamoya claims helps you prepare a stronger application from the start, or mount a more effective appeal.

Not Enough Objective Medical Evidence (Most Common)

Insurers often say there’s a gap between what you report and what the clinical records show. 

Fix it: Submit MRI/MRA reports, angiography results, operative notes, neuropsychological test scores, and a detailed statement from your treating neurologist or neurosurgeon that ties your imaging findings directly to your functional limitations.

Failure to Meet the “Any Occupation” Standard (Common at 24-month Review)

After two years, insurers often argue you could do a sedentary or light-duty job, even if you can’t return to your old one.

Fix it: Get a vocational expert opinion that accounts for all your limitations — cognitive, physical, and psychological — not just your primary diagnosis.

Insurer’s Independent Medical Examination (IME) (Common)

The insurer hires its own doctor to review your records or examine you, and that doctor concludes your limitations are less severe than claimed. 

Fix it: Ask your treating specialist to write a point-by-point rebuttal of the IME findings. A neurosurgeon familiar with moyamoya carries significant credibility.

Pre-existing Condition Exclusion (Policy-specific)

If symptoms appeared before your policy started or within the lookback period, the insurer may exclude coverage. 

Fix it: Review your policy’s exact language and gather records that show precisely when moyamoya was formally diagnosed — not just when vague symptoms began.

Gaps or Inconsistencies in Medical Records (Common)

Missing appointments or inconsistencies between your reported symptoms and clinical notes can undermine your credibility. 

Fix it: Maintain regular, documented care with a specialist and work with your care team to ensure records accurately reflect your day-to-day functional status.

5. How to Build a Strong Moyamoya LTD Claim

Whether you’re filing for the first time or preparing an appeal, these steps give your claim the best possible foundation:

1. See a specialist regularly. Consistent, documented treatment with a neurologist or neurosurgeon — ideally one experienced in cerebrovascular disease — is essential. Gaps in treatment give insurers a reason to argue your condition isn’t as serious as you say.
2. Get a detailed Attending Physician Statement (APS). This isn’t just your diagnosis history — it should spell out exactly what you can and cannot do. How long can you sit? Can you concentrate for 2 hours without a break? Your doctor’s specific answers matter more than general statements about your condition.
3. Undergo formal neuropsychological testing. This objectively documents cognitive deficits — memory, attention, processing speed, executive function — that are difficult to measure otherwise. It is one of the most persuasive forms of evidence in moyamoya claims.
4. Consider a Functional Capacity Evaluation (FCE). A licensed physical or occupational therapist will assess your physical work capacity, including how long you can sit, stand, walk, and lift. This gives your physical limitations an objective foundation.
5. Keep a daily symptom journal. Write down your bad days, what tasks you couldn’t complete, how long you slept, medication side effects, and anything else that shows how moyamoya affects your daily life. This contemporaneous record strengthens your credibility.
6. Consult a disability attorney before filing an appeal — not after. Many LTD attorneys work on contingency (no upfront cost) and can help you build the right administrative record from day one. Under ERISA, you generally cannot introduce new evidence after your appeal is exhausted, so preparation is everything.

If you’ve already been denied: You likely have 180 days from your denial letter to file an administrative appeal under ERISA. Evidence not submitted during this appeal typically cannot be used in federal court. Do not let this deadline pass without taking action.

6. Frequently Asked Questions

Is moyamoya disease automatically approved for LTD?

No. There is no automatic approval for any diagnosis. You must demonstrate that your specific functional limitations prevent you from working. Insurers evaluate your individual medical records and work history, not just your diagnosis.

Can I apply for both LTD and Social Security Disability (SSDI) at the same time?

What if my moyamoya symptoms are primarily cognitive — can I still qualify?

What if I had surgery and my condition has “improved” — can the insurer stop my benefits?

How long can LTD benefits last?

Was Your Moyamoya LTD Claim Denied?

You may still have options. An experienced disability attorney can review your denial letter, assess your appeal rights, and help you build a stronger case — often at no upfront cost. Most ERISA appeals must be filed within 180 days of your denial, so time matters. Call (888) 321-8131 for a free case evaluation.

h