Loeys-Dietz Syndrome: From Daily Challenges to SSDI Benefits

Welcome to Season 2, Episode 24 of Winning Isn't Easy: Social Security ®. In this episode, we'll dive into Loeys-Dietz Syndrome: From Daily Challenges to SSDI Benefits.

Loeys-Dietz Syndrome (LDS) is a rare connective tissue disorder that can affect multiple body systems, creating significant medical complications and functional limitations that interfere with daily life and employment. Despite the seriousness of the condition, many Social Security Disability applicants face challenges because rare disorders like LDS are often poorly understood during the disability evaluation process. In this episode of Winning Isn't Easy, we examine how Loeys-Dietz Syndrome can support a Social Security Disability claim and how the Social Security Administration evaluates impairments that do not always fit neatly within its disability listings. We discuss the medical characteristics of LDS, the importance of documenting functional limitations across multiple organ systems, and the types of evidence that can strengthen a claim. We also explore common reasons these claims are denied and practical strategies for presenting medical records that accurately reflect the real-world impact of living with Loeys-Dietz Syndrome. Whether you are applying for benefits or appealing a denial, this episode provides valuable insight into how the SSA evaluates rare genetic disorders and what you can do to build a stronger disability claim.

In this episode, we'll cover the following topics:

One - What Is Loeys-Dietz Syndrome?

Two - Social Security’s Five-Step Sequential Evaluation Test

Three - Daily Life, Limitations, and Disability Considerations

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Long-Term Disability ®. Give it a listen: https://wiedisabilitypodcast.buzzsprout.com


Resources Mentioned In This Episode:

LINK TO YOUR RIGHTS TO SOCIAL SECURITY DISABILITY: https://mailchi.mp/caveylaw/your-rights-to-social-security-disability-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


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Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals.

Transcript

Nancy Cavey [00:00:00 - 00:01:02]

Foreign. If you or a loved one lives with Lowy Dietz Syndrome, you know that daily life comes with serious medical and physical challenges. But did you know that those challenges can also support a Social Security disability claim? Welcome back to Winning Isn't Easy Social Security Disability Benefits this is a podcast where we break down everything you need to know about navigating the Social Security system. I'm your host, Nancy Cavey. Before we get started, I've got to give you a legal disclaimer. This podcast isn't legal advice. The Florida Bar association says I have to tell you this. But now that I've told you this isn't legal advice, nothing will prevent me from giving you an easy to understand overview of the Social Security disability claims process, the games that are played and and what you need to know to get the disability benefits you deserve.

Nancy Cavey [00:01:02 - 00:02:19]

So off we go. I want to welcome you to today's episode where we're diving deep into Loey Dietz Syndrome LDS and how it will intersect with a Social Security Disability claim. LDS is a rare genetic condition that affects the connective tissue, the very tissue that provides strength and flexibility of your bones, muscles, ligaments and even blood vessels. Because it's connective tissue, it's everywhere in your body and as a result, lds can impact multiple organ systems at once, making daily activities work and long term health management challenging. For many people with LDs, navigating the Social Security disability claims process can feel overwhelming. And I will tell you, the Social Security Administration doesn't fully understand rare conditions like Louis Dietz Syndrome, which means that claims can get denied even if the medical evidence and functional limitations aren't well documented. Now today, what I want to do is break down the medical aspects of LDs, explain how Social Security evaluates disability claims, and explore how daily life challenges from everything from mobility limitations to medical appointments can actually strengthen your claim. And by the end of the episode, you'll have a clear episode of the understanding of your condition, your legal options, and what steps you can take to give yourself the best chance to win.

Nancy Cavey [00:02:20 - 00:02:39]

So let's get started. I'm going to talk about three things today. First, what is Louie Dytes Syndrome? Two, what is the Social Security five Step Sequential Evaluation test? And three, what are its daily life limitations and disability considerations in a Social Security claim? Let's take a quick break and we'll be back in a moment. To get back into this episode, are

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Nancy Cavey [00:03:15 - 00:03:57]

Welcome back to Winning Isn't Easy. What is Loey Dietz syndrome? Well, let's start with the basics. It is a genetic disorder that affects connective tissue in your body. Now, this connective tissue isn't just structural. It's basically what keeps your bones, ligaments, muscles and blood vessels strong yet flexible. Because LDS affects connective tissue throughout the body, it can cause a wide range of complications, some of which can prevent you from working. What are most common problems associated with LDS that can also result in a Social Security disability claim? Well, first, they are cardiovascular in nature. There can be an enlargement of the aorta, which can lead to life threatening aneurysms or dissections.

Nancy Cavey [00:03:57 - 00:04:50]

Two skeletal tissues, including scoliosis, premature skull fusion, chest deformities, joint contractures, and inflammation of major joints. Number three, there can be pulmonary concerns such as spontaneous lung collapse or other respiratory complications. Next, there can even be hernias due to weakened connective tissue. Now, while LDs can affect nearly every organ system, the most disabling conditions, based on my experience, tend to be cardiovascular and skeletal in nature. So let's talk about those. One of the most serious hallmarks of LDs is cardiovascular in nature. It's the enlargement of the aorta, which is the main artery that carries blood from the heart. That can lead to aneurysms, which are dangerous bulges in blood vessel walls, aortic dissections, which are sudden tears in the layers of the aorta that require immediate medical attention.

Nancy Cavey [00:04:51 - 00:06:03]

Now, aneurysms in dissection can also occur in other arteries, including those in the brain, the abdomen, limbs, and that can make monitoring and ongoing treatment essential. The other subset of issues are skeletal and that can dramatically impact your mobility and daily functioning. So this can include scoliosis or an abdom abnormal curvature of the spine, which makes it very difficult for you to walk or sit. There are also joint contractures which will actually limit the range of motion of a joint. And that's particularly important when we're talking about things like the shoulders, the elbows and the hands that would impact your ability to use your upper extremities. There also can be inflammation and chronic pain affecting the spine, hips, knees, hands and wrists, and particularly the spine and the hips and the knees can make it difficult to sit and do a sedentary job. There can also be chest and craniofacial abnormalities that can affect not Only the breathing, but the posture that you have to maintain yourself in to deal with your pain. Now, these cardiovascular and skeletal changes can make physical labor or even light work unsafe or impossible.

Nancy Cavey [00:06:03 - 00:07:35]

But at the end of the day, we have to prove at step three, potentially that you meet a listing and if so, benefits are automatically awarded. But if not, we're going to go on to steps four and five of the five step sequential evaluation test. And at step four and five, the issue becomes what are your physical restrictions and limitations? How long can you sit, stand, stoop, walk, bend? How much can you lift? Do you have difficulty with walking? Balance, coordination? Do you have issues that would cause you to be off task at least 20% of the time or miss work at least two days of work per month? Because ultimately the issue is can you do other work in the mythical hypothetical, not real world national economy you wouldn't want to do doesn't pay a living wage. In view of your age, education, skills and your restrictions, your restrictions can preclude you from the ability to do even stupid jobs like being a surveillance system monitor, sorting nuts and bolts, addressing envelopes. And if you're over 50, it can also help you meet what's called the grids, because there are alternative ways if you're over 50 to win that crazy cockamamie not real world test and the grid test. But in any event, your functional restrictions and limitations are really key and something that needs to be well developed in your medical records. Now in the next session, I'm going to take a more in depth look into the five step sequential evaluation and what it is I think you need to prove at each step to win your case. So let's take a quick break.

Nancy Cavey [00:07:52 - 00:08:40]

Foreign. Welcome back to Winning Isn't Easy. The five step sequential evaluation test used by Social Security at every step of a claim. So now that we have a basic understanding of the medical issues, let's talk in greater detail about the five step sequential evaluation test used in every case. Now, at step one, you have to prove that you've been out of work for a year or have a medical condition that would keep you out of work for a year. Really pretty easy to prove. Step two, we really are talking about a medically determinable impairment which is documented by objective testing. And at step three, we have something called the medical listings.

Nancy Cavey [00:08:41 - 00:09:25]

Now when we all went to high school and took that biology class, we learned about the body in terms of body systems. Social Security uses the same system based approach. They're going to look at your medical records to see if Your condition meets or equals a listing. But here's the challenge. There is no specific listing at step three for LDs. However, cardiovascular and orthopedic or musculoskeletal listings can apply. So if, for example, your aortic enlargement or your aneurysm or your scoliosis meets the applicable criteria, you might qualify under the listings. But I will tell you, it's very hard to do that because doctors didn't take a class in medical school to learn how to write a report for Social Security purposes.

Nancy Cavey [00:09:26 - 00:12:02]

So more often than not, I'd say 90% of the time, we're at steps four and five of the five step sequential evaluation test. Now, at step four and five, the issue becomes, can you go back to the lightest job you held in the five years before your claim is decided? And at step five, can you do other work in the mythical hypothetical real world national economy? Or do you grid out if you're over 50? What is important about all of this is developing your functional physical restrictions and limitations that would preclude you from doing the kind of work you did in the past or at step five, jobs that require you to sit down all day. And so one of the ways that we Social Security lawyers try to get at this information is to have your doctors fill out some forms that we Social Security lawyers have created. Social Security is going to tell you about these forms, and those forms are called Residual Functional Capacity Form. Now, what I try to do is to use cardiovascular and musculoskeletal forms to get the doctors to address such things as how do your symptoms, well, what are your symptoms? How do they limit your ability to lift? How do they impact your ability to walk? How do they impact your ability to stand, bend, and how often or how long can you sit at one time? Do you need to alternate sitting and standing? Do you have issues which would cause you to take breaks greater than what you would normally take? Would you be off task at least 20% of the time? And by the way, would you miss time from work? Now the other thing that's important that these forms will document is the progression of your symptoms and, and how they've impacted your ability to work. That includes a treatment history documenting the nature of your treatment and the side effects that interfere with your function. I think that it is really crucial as we kind of think backwards, think backwards at step four about what it is you do and why you can't do it, and make sure that your medical records are documenting the physical limitations that will prevent you from doing your occupational duties and make sure your doctor is documenting this. Then I want you to think about why you can't do a job sitting down all day, using bilateral manual dexterity to pick up those nuts and bolts or pecans or peanuts or the envelopes, why you would have trouble sitting there, why you would have trouble concentrating, why you would have trouble potentially using your hands to do any of those activities, why it is you might need breaks that are greater than what everybody else has to do and why you might be absent and how many times a month you would be absent.

Nancy Cavey [00:12:02 - 00:12:27]

Those are the kinds of things that you can do to document your limitations. Help your doctor complete the residual functional capacity form and in my opinion, really paints the picture of the impact of your lds. Got it. Let's take a break. When I come back, we're going to talk about daily life limitations and disability considerations in your LDS Social Security Disability Claim.

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Nancy Cavey [00:13:09 - 00:14:21]

Welcome back to Winning Isn't Easy. Let's talk about daily life limitations and disability considerations in a Loey Dietz case. Now there are challenges and these challenges translate into an inability to work on a full time basis. And what I think is important here is to take those challenges and use them to your advantage in winning a Social Security claim. So let's talk about monitoring and medical care. Living with LDS requires frequent medical monitoring, for example, imaging to track the aortic and arterial health, consultations with cardiologists, geneticists and orthopedists, potential surgery for life threatening complications. What all of this does is to help Social Security see that this ongoing care is really evidence of a chronic, severe condition that impacts your ability to work on a sustained basis consistently, meaning the attendance, production and pace requirements. How about lifestyle adjustments? I think that it's really important that your medical records and the forms that you are filling out are documenting your lifestyle adjustments.

Nancy Cavey [00:14:21 - 00:15:26]

So your daily life might require you to use mobility aids, braces, ergonomic supports. It might require significant medication and that medication may cause side effects that should be documented. It also may impact your basically your capacity, functional capacity, and how long you can do something without having problems. In other words, you might have a quote unquote Good day. And even doing something minimally impacts you, and you have a setback for the next day or a couple days because you've tried to do something exertionally that was just overexertion. And it could be something as simple as trying to make a bed or to change the sheets or something like that. The other thing your records need to document is the nature of the care that you're getting and your compliance with that care. So you might also be doing specialized exercise routines to maintain your strength.

Nancy Cavey [00:15:26 - 00:16:32]

So you want to make sure that you're talking about that, what you're doing, how long it takes, how many times a day you're doing it, and quite frankly, what happens if you don't do it. Another important consideration is the emotional and social impact, because LDS affects your mental health. Now, I will tell you that psychiatric or psychological issues in and of themselves are not going to win a case. It's the physical problems, symptoms, restrictions, limitations that will make the case. But we don't want to ignore things like anxiety, anxiety about sudden medical emergencies, stress and fatigue that comes from managing a complex medical condition. Difficulty concentrating, difficulty staying on track, if you will, difficulty interacting with your family, the public, people you might meet in a store, difficulty maintaining just a regular routine. You might have a routine, but if you're having a bad day, you're not necessarily following that routine. Or as I said, if you overexert yourself, then you have a setback.

Nancy Cavey [00:16:32 - 00:17:36]

Documenting the mental and emotional and physical burdens that you have shows that you have a condition that impairs your functioning, and that is across your activities of daily living and obviously could potentially impact your ability to keep working or maintain work. Functional evidence is really crucial. Again, documenting your daily limitations. Mobility challenges, the inability to lift or stand, the impact that frequent medical appointments have really provides tangible proof of disability. Now, if you're seeing the doctor frequently and you say, I have difficulty sitting, for example, but your doctor is an hour away, that can be a bit inconsistent. But if you were to say, you know, I know every McDonald's on the way from my house to the doctor's office, and I have to stop every 20 or 30 minutes, that makes more sense. Or I'm in the backseat flat while somebody's driving me to the doctors. And by the way, by the time I get home, I'm wiped and I have to take a nap.

Nancy Cavey [00:17:37 - 00:18:45]

So again, documenting the limitations, the impact that activity has on your physical, cognitive, and emotional functioning is really, really crucial. And of course, combine that with that great history of symptoms and functionality in your medical records and and a residual functional capacity form to create a strong case for Social Security Disability approval. I know that living with LDS is challenging, but understanding your medical reality, your functional limitations and legal options can make a critical difference in getting your benefits. You can see that working closely with a physician and when possible, a Social Security Disability attorney will make sure that your file, your claim and the medical evidence reflects the full impact of lds on your life. Look, these limitations are not minor inconvenience. They're evidence of your disability and your rights, your Social Security disability benefits. Got it? Well, that's it for today's episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like our page, leave a review, share it with your family or friends, and of course, subscribe to this podcast.

Nancy Cavey [00:18:45 - 00:18:53]

Please join us next week for another insightful episode of Discussion of Winning Isn't Easy. Thanks for listening.