First, some breaking news to share with your (and especially with your kids’) XLH clinician: The International XLH Alliance has put together an absolutely fabulous XLH symposium for health care professionals on July 1, 2022 in association with the International Conference on Children’s Bone Health (ICCBH). The speakers are all amazing (I can personally vouch for many of them as both experts and excellent presenters!), and the topics cover both the current and future treatment of XLH. There will likely be information useful for other rare bone disorders too, like the sessions on gene editing, if your clinician treats other bone disorders as well as XLH. So please make sure your clinician knows about it, in case they’re already planning to attend ICCBH, but haven’t heard about this symposium.
And now for our main subject. In prior posts, I went over the basics of Social Security Disability eligibility and the application process. Today, I’ll discuss the nitty-gritty of establishing permanent, total disability in the XLH context.
Once again, first, a caveat, that this is for educational purposes only, not individual legal advice. I do have legal training, but I did not represent clients seeking disability compensation, so my explanations here are based primarily on my personal experience applying for my own Social Security Disability benefits. I can’t give anyone individual legal advice, and strongly encourage you to seek out a lawyer in your jurisdiction who has experience with Social Security disability claims if you have questions. This information is intended to help you to help your attorney, who may not familiar with XLH and how it can be disabling.
The first step in establishing that you are permanently and totally disabled involves showing that your diagnosis falls within one of a number of health conditions that the Social Security Administration considers potentially severe enough to be totally disabling. XLH is not specifically listed, but the categories are fairly broad, and your symptoms may fall under a number of category headings, depending on your individual circumstances. Your lawyer and the reviewer in the case won’t necessarily know that though (since they’ve never heard of XLH before), so you’ll want to be prepared to explain how XLH fits into the listings.
The musculoskeletal category includes things like joint reconstruction and nerve damage due to spinal conditions. Hearing loss is discussed in the “special senses and speech” category. The endocrine category references parathyroid conditions (if they cause disabling musculoskeletal symptoms), but not excessive FGF23 production (although that might fall under the “other metabolic conditions” category, since we now know that bones are part of the endocrine system). Anyone with significant spinal cord impingement might be covered under the neurological section (as well as the musculoskeletal category).
In my case, I compared my condition to the musculosketal disorder they describe as “lumbar spinal stenosis resulting in compromise of the cauda equina.” That refers to a narrowing of the space inside the spinal column in the lower back, which impinges on the nerves going to the legs. One of the oddities of XLH is that, in my experience, we tend to have more thoracic stenosis (between the shoulder blades) than lumbar stenosis, but the end result is the same: nerve damage causing mobility challenges. In retrospect, if I were doing the application now, I’d probably have gone the simpler route of simply saying my condition fell within the category of “disorders of the skeletal spine resulting in compromise of a nerve root.”
It shouldn’t be too difficult to invoke a category that applies to a specific patient’s symptoms. You could probably invoke multiple categories, rather than just one, but that’s a strategy decision to be made in consultation with your lawyer. You don’t want to confuse the reviewer with too much information, but on the other hand, it may be useful to show how wide-ranging your symptoms are, especially if no single symptom is disabling, and instead you’re arguing that the cumulative effect of so many symptoms is what pushes you over the edge and into total disability. For my case, I felt that it was important to show that it was the totality of my symptoms, affecting everything from mobility to headaches to fatigue and pain, that disabled me, not any one single symptom. For other applicants, it may make more sense to focus on just one obviously disabling symptom, so it’s really a strategy decision, not a universal approach.
Once these categories are invoked, you still need to prove that the condition is totally disabling. Again, the lawyer and the case reviewer may be familiar with common examples of the general categories or things like the spinal stenosis that often occurs in non-XLH patients in old age, but they won’t know how these symptoms manifest either in the XLH population overall or in a specific XLH patient. Remember that not all XLHers have all of the possible symptoms or the same degree of severity, so there can’t be an automatic conclusion that a person with XLH is disabled. Instead, each individual applicant needs to establish 1) which XLH symptoms they have, 2) that the symptoms are severe (individually or cumulatively), and 3) that they make it impossible to engage in any significant work whatsoever.
So how do you and your lawyer do that? The most useful thing you can do is probably to keep a sort of diary of symptoms and limitations for several weeks or even months. It doesn’t have to be fancy or pretty or even use good grammar and spelling! If you like to journal, that’s great. But if not, it can be just as useful to make lists of symptoms/limitations as they occur, with dates of when they happen. You can even print a blank calendar and put the symptoms/limitations in the relevant dates. Or put them in a note-taking app on your phone. (I love Google’s Keep app for Android, and there’s something similar for Apple products.) The format doesn’t matter; the consistency and duration of the diarying is what matters. Ideally, you’d collect a month or two of these notes, since some issues don’t happen every day or even every week, but even a week’s worth is better than no notes at all. When I did it, I noticed quite a few limitations that I hadn’t been consciously aware of, which allowed me to be more specific and comprehensive in my application from the very beginning, without having to amend it later, which can sometimes look a bit desperate and unpersuasive. (“How bad can it be if you didn’t even remember it initially?” The answer, of course, is that we live in denial of a lot of our issues, just so we can get through the day, but only someone who lives with a chronic disorder understands that.)
Keeping this kind of diary is often recommended by personal injury plaintiffs’ lawyers, to make sure that none of the clients’ issues are overlooked. Yes, it will take some time to do, and it can be emotionally draining, having to pay attention to your symptoms and limitations in a way that you probably don’t do most of the time. But it’s really important to do it. In my experience, the diary will demonstrate a variation on what’s been by XLH patients about the experience of starting treatment: many of us don’t know how bad we feel until we start to feel better. The same is true about our daily awareness of our symptoms/limitations: we don’t know how bad we feel or how limited our activities are until we force ourselves to pay attention and write it all down.
So, starting a few weeks or months before you expect to apply for disability, establish a habit of writing down your XLH symptoms for the day, and how XLH disrupted your ability to work. Some of the things to pay attention to include incidents such as 1) when you experience severe pain or fatigue and either can’t work or can work only with great effort; 2) when you need to take a break beyond regularly scheduled ones; and 3) when your treatment regimen requires you to take time off from work, either due to visiting the doctor or experiencing side-effects of the meds. But don’t entirely limit your notes to what occurs while literally at work. Consider the challenges you experience getting in and out of a vehicle or otherwise commuting to/from work; the exhaustion you feel at the end of a work day that prevents you from doing necessary daily activities at home (like making meals and doing housework); the weekends you spend unable to get out of bed, sleeping excessively to recharge for the workweek, unable to maintain your home or have any kind of social life or engage in hobbies. Yes, it can be depressing to think about all of these things, and embarrassing to admit your limitations, but it’s necessary to give your lawyer and then the case reviewer a full understanding of a disorder they might otherwise think causes nothing more problematic than shortness and bowed legs, symptoms that are not, by themselves, particularly disabling from most jobs.
It may also be useful for your attorney if you can create an addendum to the diary to explain how various symptoms make it impossible for you to work. For example, in my case, due to the spinal stenosis and nerve involvement, I couldn’t sit at a desk for a total of more than two or three hours even with frequent breaks, so I couldn’t even do what would be considered extremely light duty. There just aren’t any employment opportunities for a lawyer who can’t work more than two or three hours a day.
Another thing you can do to prepare to meet with your attorney or submit your application is what’s known as a “Day in the Life” video. They’re a popular tool for personal injury plaintiffs’ attorneys to show, in a compelling manner, just how bad the client’s injuries and limitations are. It’s the legal equivalent of the maxim, “actions are more powerful than words.” It’s one thing for your lawyer or reviewer to hear that you have difficulty commuting to and from work, and quite another thing (far more compelling) to see video of you struggling to get in/out of a car or dealing with marginally accessible public transportation or trying to pick up something that fell on the floor or whatever else your job requires that you cannot do.
For major cases that go to trial, these videos are produced professionally and can be expensive. That’s not necessary at the application stage of a disability claim, and instead you can benefit from an amateur version, if only to share with your attorney. Get a friend or family member to take a video on your phone, showing you doing some things you struggle with that affect your ability to work, and use it to educate your attorney. (Remember the honesty advice from before: don’t exaggerate and also don’t downplay the difficulties.) Even the most skilled lawyer can only advocate well when they fully understand the client’s situation, and they can’t get a full picture of your challenges during a brief appointment in an office setting where you’re unlikely to be encountering the challenges that prevent you from working. It can really help them to understand your situation if they can see for themselves that you’re not exaggerating your difficulties or, for lack of a better description, being a big baby about minor things. They need to be prepared to respond if others think you’re exaggerating, etc., and the best way to prepare them is to simply show them your struggles.
Finally, think about any surgery (or other time-consuming treatment, like physical therapy) that may have been recommended, but that you’ve been unwilling to do yet, perhaps because of how it would require time off from work. Compile a list of the specific diagnoses (e.g., spinal stenosis due to the XLH), the recommended surgical procedure (e.g. laminectomy), the timeframe for healing and returning to work (e.g., two months or more), whether you would even be allowed to return to work after the surgery, and how soon you expect to have to do it (assuming you’ve decided to do it). While it may not be directly relevant to whether you are currently disabled, it’s indicative of just how serious your symptoms are. And, again, the cumulative aspect of planned surgeries might be useful evidence, if, for example, you’ve been advised to have both spinal surgery and multiple joint replacements.
Finally, it can be helpful to collect some journal articles that talk about just how disabling XLH can be, to educate both your attorney and the case reviewer. You’ll still need to show that you have the disabling symptoms and that they do adversely affect your work, but given how little your attorney and the reviewer are likely to know about XLH, it may be helpful to first lay the groundwork to establish that XLH is known for causing the symptoms to a disabling degree. It’s not technically necessary to tie your symptoms back to XLH, since if you have spinal stenosis that prevents you from working, it kind of doesn’t matter what causes it. But I think it’s likely to be more compelling to a reviewer if you can show that it’s common for XLH to cause a whole panoply of symptoms that, either individually or together, aren’t minor annoyances but are obviously disabling. It’s another way of shifting the mindset of the attorney or reviewer from thinking, “Oh, XLH just causes shortness and bowed legs, no big deal,” to thinking, “Wow, XLH is a comprehensive disorder with a dozen or more symptoms that, even if not individually disabling, are more than enough to disable a person when viewed cumulatively.” Fortunately, we now have several peer-reviewed medical-journal articles that document the wide range of disabling symptoms in adults, and I’ll have links to them in next month’s installment.
So, watch for the (probably) final installment of this series the end of next month, when I’ll wrap up loose ends and share links to reliable resources to help explain XLH to an attorney or the case reviewer. If you have any questions (not specific to your own case), which you’d like to see me address here, please email them to me: Gin at GinJones dot com, and if I can answer them, I’ll do an additional post in this series. And don’t forget to share the information about the XLH Symposium at the ICCBH conference with your or your kids’ clinician!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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