Disability Benefits for Rare Diseases and Conditions

Living with a rare disease can feel isolating. When most people—even many doctors—haven’t heard of your condition, it’s easy to feel like you’re on this journey alone.

The stress of trying to secure disability benefits, on top of managing your health, can be overwhelming. You may wonder, “Will anyone truly understand what I’m going through? Will my rare disability be taken seriously?”

At Pekas Smith: Arizona Disability Attorneys, we know how difficult this process can be. We’ve worked with many individuals with rare diseases and conditions, and we understand the unique hurdles you’re up against.

Our goal is to make sure you don’t go through this alone, helping you every step of the way to secure the little-known disability benefits you need to live your life.

Understanding Rare Diseases Benefits

Rare diseases, often called “orphan diseases,” affect a small percentage of the population.

These conditions, often genetic, manifest in diverse ways, posing significant challenges for patients and the healthcare system.

Rare diseases impact individuals uniquely, leading to various symptoms that can disrupt daily life. Those with rare diseases often find it particularly difficult to navigate the complex process of securing Social Security disability benefits. Why?

Well, disability benefits are designed to provide financial assistance to those unable to work due to a serious health condition. However, when your condition is rare, it’s often poorly understood by the SSA and even some healthcare providers. The SSA has criteria for disability, and many rare diseases aren’t explicitly listed in their guidance. This means you must provide thorough, convincing evidence to show how your condition affects your ability to work.

How Rare Diseases Are Classified by the SSA

The Social Security Administration (SSA) doesn’t have a specific “rare diseases” category in its Blue Book, a guide used to determine if a condition qualifies for disability benefits. Instead, the SSA focuses on how a condition affects your ability to work, regardless of how common or rare it is.

This means that even if your disease is something most people have never heard of, what matters to the SSA is the severity of your symptoms and how they impact your daily life. The challenge with rare diseases is that they often don’t fit neatly into the SSA’s predefined categories. This means you must go the extra mile to prove your case, which could involve:

• Gathering more detailed medical records
• Working closely with specialists who understand your condition
• Demonstrating how your disease makes it impossible for you to maintain employment

Documenting a Rare Disease for Your Disability Claim

Your medical records are the strongest evidence in your disability claim. These records should include detailed notes from your doctor visits, test results, and any diagnoses you’ve received. If your condition requires you to see multiple specialists, ensure each one’s input is included. The more comprehensive your medical history, the better.

Keep a detailed diary of your symptoms and how they affect your daily life. This personal record can provide a vivid, day-to-day snapshot of your challenges, which can be compelling in a disability claim. It’s not just about listing symptoms; it’s about showing the SSA how your condition impacts every part of your life.

In addition to your records, get support from healthcare professionals specializing in your condition. Ensure they provide detailed statements explaining your diagnosis, your treatment regimen, and the prognosis of your condition. Their expert insights can make a significant difference in your case.

Examples of Rare Diseases That May Qualify for Disability Benefits

Some examples of rare diseases that may qualify for disability benefits are:

• Huntington’s Disease: An inherited condition that progressively deteriorates nerve cells in the brain, leading to movement, cognitive, and psychiatric issues.

• Cystic Fibrosis: A genetic disorder that impairs the lungs and digestive system, causing respiratory problems and difficulties in nutrient absorption.

• Amyotrophic Lateral Sclerosis: Also known as Lou Gehrig’s disease, this progressive neurological condition damages nerve cells in the brain and spinal cord, resulting in muscle control loss.

• Chronic Myelogenous Leukemia: A rare cancer that starts in the bone marrow and spreads to the bloodstream.

Despite the existence of rare diseases, not all are specifically mentioned in the Blue Book.

However, the SSA may still grant disability benefits if your condition is as severe as another medically equivalent impairment listed in the book, provided you meet the required criteria.

Appealing a Denied Claim for Rare Disease Benefits

Having your rare disease benefits denied can be disheartening, especially when you’ve already been through so much. But remember, denial isn’t the end of the road. Here are steps you can take to appeal and strengthen your case:

• Review the Denial Letter Carefully

Review the denial letter carefully before taking action. The SSA will provide specific reasons why your claim was denied, such as insufficient medical evidence. Understanding these reasons will help you address them effectively in your appeal.

• Gather Additional Medical Evidence

With rare diseases, documentation is everything. Work with your healthcare providers to gather any additional medical records, tests, or expert opinions that can support your claim. Sometimes, a second opinion from a specialist who understands your condition better can make a significant difference.

• Prepare a Strong Written Appeal

Craft a clear and compelling written appeal that addresses the SSA’s concerns. Highlight the new evidence you’ve gathered and explain how it supports your claim. Ensure you’re thorough and detailed, as this can make all the difference in the outcome of your appeal.

• Submit Your Appeal on Time

Timing is critical when it comes to appeals. The SSA gives you a limited window to submit your appeal after receiving a denial. Make sure to file within the required timeframe, and take this opportunity to present a comprehensive and compelling case.

• Consult with a Disability Lawyer

The appeals process can be complex, especially with a rare disability. An experienced Arizona disability lawyer can give you the guidance you need. At Pekas Smith: Arizona Disability Attorneys, we understand the unique challenges that come with little-known disabilities and can help you build a stronger case.

Contact an Experienced Disability Lawyer Today

At Pekas Smith: Arizona Disability Attorneys, we know that living with a rare disability is not just a medical challenge—it’s a daily journey that impacts every facet of your life.

With years of experience securing millions of dollars in disability benefits for our clients, we have the knowledge to assist you. We can guide you through the intricacies of applying for rare disease benefits or appealing a denied claim.

We offer free consultations because we believe everyone deserves access to expert legal advice. Our goal is simple: help you receive the benefits you need to lead a more comfortable, secure life.

Contact our Arizona disability attorneys at 602.962.2818 for your free consultation.