Rating Ehlers-Danlos Syndrome (EDS) for Military Disability
We have run up against another tough condition to assign a Military Disability Rating to for military disability.
Ehlers-Danlos Syndrome, or EDS, is a genetic condition that a person is born with. It is a condition where collagen is not produced correctly. Collagen is essential to the proper growth of the tissues. Without it, or if it is faulty, the tissues are more stretchy, causing them to have trouble keeping their shapes and perform their proper functions. The worst part about this is that any part of the body can be affected, including the joints, skin, muscles, ligaments, and organs. It is also has no cure.
So now that we know what it is, how to rate it. Because EDS is genetic, it technically cannot be rated since military disability is not given by either the DoD or the VA for any genetic conditions. This is because you would have had the condition regardless of whether or not you served in the military. This does not mean, though, that it cannot receive a rating and disability compensation in certain instances.
First, all genetic conditions are treated like EPTS (existed prior to service) conditions. For it to qualify to receive disability, the EDS condition (and all other EPTS conditions) must have gotten significantly worse because of military service than it would have if you had not been in the military. Common causes could be demanding physical training, exposure to chemicals, etc.
For example, let’s say that Bob has EDS that mainly affects his joints. The doctors think that it would be reasonable to expect Bob to start having trouble controlling his joint movements by the time he turned 40 (this is extremely unrealistic, but I’m using it just for the sake of keeping the example as simple and straightforward as possible). Bob joined the military when he was 20, and had significant physical demands that caused him to start experiencing trouble controlling his joint movements when he was 30. The doctor’s think it is pretty logical to assume that he would not have begun having symptoms that early had he had a desk job with low physical demands. Thus, Bob’s EDS does qualify for rating since it was clearly made worse by his military service.
Remember, this example is very simplified. For the majority of cases, it will be much harder to determine whether or not an EDS condition was indeed worsened by service. Ultimately, this judgment is up to the physicians performing your exams and the Rating Authorities that determine your disability ratings. You can help your case, however, by getting as much definite proof as possible for both your physician’s and the Rating Authorities.
Alright, now that we know the condition can be rated, things get even more tricky when actually trying to rate it.
If a genetic condition qualifies for rating, it can be rated, but only on how much it was worsened by military service. So, in Bob’s case the symptoms that he did have at age 30 would be compared to the symptoms he should have had at that age, and then the difference would be rated.
Let’s further the example by saying that the condition affected his right elbow. If at age 30 he should have been able to bend it all the way to 90°, but could only actually bend it to 60°, then it would be rated on the difference, 30° (90 – 60 = 30). That is how much the military worsened his condition, and thus, that is what they will compensate.
That’s the basic rule for all genetic conditions and EPTS conditions, although very simplified.
Next we need to discuss the basics of rating EDS specifically.
Since EDS can cause so many different symptoms, it isn’t given just a single rating. Instead, each of the symptoms is rated separately. For example, let’s say Bob’s EDS causes limited motion in his elbow and affects the functioning of the liver. Both of these conditions are separately rated. He would get two ratings: one for the elbow and one for the liver. Just find the condition that most closely describes each symptom. But remember, for each of these conditions, they are only rated by how much worse military service made them.
That’s it. Just remember, if your symptoms would have been the same if you hadn’t been in the military, they can’t be rated. Don’t waste your time and effort trying to get a rating that simply won’t be given.
Unfortunately, it’s impossible to determine exactly how your EDS condition will be rated. It is completely up to the Rating Authorities. There are so many ways to interpret things, that there isn’t really much you can do to help your case besides making sure the Rating Authorities have complete medical information about every symptom you have. In this post, I have simply outlined the laws and processes they are required to use when determining the ratings for your EDS. Hope this helps.
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I am currently looking at being tested for EDS. I show all the telltale signs, but would like to know if EDS will disqualify me from military service, if there are any regulations covering it, or if it's left to the discretion of the military providers.
Hi Steve –
It all depends on your symptoms and their severity. If they aren't severe enough to inhibit you from performing your job or being deployed, they'll probably keep you on duty until they get worse. Once they make you unfit for duty, they will medically separate you at that time. So without knowing the severity of your symptoms, I can't determine whether or not they will immediately separate you.
I was free of symptoms until my stint in the army. During that time I developed multiple pelvic fractures for which I was ultimately medically discharged. During that time I also had neck pain, headaches, knee pain, elbow pain etc, for which I was evaluated, but received no diagnosis. I have been diagnosed with EDS, dysautonomia (a comorbidity which also showed itself first during my service)and other issues. Two years later I am now trying to file with the VA. Any suggestions or advice for me?
The key for you will be to show thorough proof of the development of your symptoms while in the military. Make sure to include every medical record you have regarding. I also recommend including your entrance medical exam showing a clean bill of health. This will prove that your condition worsened while on active duty. Any and all evidence you have of your conditions/symptoms while in the military will be by far the best thing you can submit to ensure a strong claim.
Hi – Posting this question on behalf of my husband. He has had 4 shoulder surgeries and one neck/spinal, all since being in the military. After his recent discectomy (June 16) he has now been referred back to the surgeon for neck pain she has suggested testing for Ehlers-Danlos Syndrome. They have already said they will be submitting the paperwork to medically retire him, I'm wondering if a diagnosis will help his case, sounds, from your post above, that it could actually dismiss some of his claim? He is 39 and at 21 years service. They have been testing him for years for different things to explain a lot of his symptoms and have not been able to identify anything, meanwhile they have continued to push him physically to pass physical tests, seems if he had received more consistent health care they could have discovered this earlier and lessened the impact on his joints etc… Does this have any merit to it?
If he is diagnosed with EDS, then that will definitely decrease the amount he would receive for his conditions since it is genetic and so technically ineligible. Military service is unquestionably tough on the body, however, and so in most cases, it can be prove that service made the condition worse, and so it is aggravated and eligible for some compensation. Again, however, it won't be the full amount he would be eligible for if he doesn't have EDS.
I'm a prior AD, now reservist. I am 12yrs in and currently deployed. I had been rated by the VA when I initially separated in 2007 receiving 30% for multiply claims. This past year the VA reevaluated me and increased my ratings to 50%, possibly going higher once I submit additional documentation. I am also a military dependant and was just diagnosed with EDS and am awaiting further testing to pin down my complete diagnosis. 2 Questions…
1. If I cannot take a full of PT test any more and need to have a permanent aerobic waiver will that result in a MEB even though I have a low threat office job?
2. Will the VA lower my disability rating now many of my injuries could be determined to be genetic?
I don't double dip as my wages are balanced between the reserves and the VA, but I'm concerned that some how I got caught in catch 22…
Suggestions or recommendations on how to proceed are welcome.
You might indeed be referred to the MEB for your conditions. It just depends on the circumstances. Usually, any conditions that disqualify you for deployment would make you Unfit for Duty, but depending your MOS and the demand for that MOS, they can keep you in on a waiver.
Without knowing exactly what conditions you are rated for and your EDS circumstances, it's impossible for me to predict what the VA will do. In most cases, they rarely lower ratings. However, any symptom caused by EDS will be considered EPTS and so MAY be adjusted.
Ultimately, since your conditions have already been rating, it's really difficult to know just what the VA will decide.
I was diagnosed with EDS a couple years ago after racking up a list of seemingly unrelated problems shortly after my last pregnancy, including: pain in most joints, fibromyalgia, migraines, mixed urinary incontinence, uterine prolaspse, rectocele, Reynaud's, etc. Can each of these be rated or will any medical ratings be cut down because of the EDS diagnosis?
Tough to say. If the medical evidence shows that any of your conditions are directly caused by EDS, then yes, that rating could be affected. However, some of these could be considered an unrelated condition (again depending on the evidence), so those would be rated separately. Ultimately, it will come down to what is directly attributed to EDS and what isn't.
Hi, I'm just getting this question out there before I enlist. I don't want to waste my recruiter's time, so if like to know if it's a good idea to enlist with my symptoms. Though I may not experience dislocations or sprains I still suffer internal symptoms like; hyper-mobility (which isn't that bad),random fatigue, flash headaches – which usually go away within a minute of getting them, constantly popping knuckles and joints (even my shoulders too, I'm like a little marionette) and rarely this weird cold ache in my bones (even when it's really hot out).
Now, I have an exceptional score that I'm proud of and I want to help my country with a score like mine (94), but I fear that with these symptoms I cannot enlist. I'm currently going through physical training at home well before my physical examination so I can make sure I'm as strong as my peers.
But I must know, can I enlist? These symptoms don't affect me severely, they just make a few seconds a day dizzy most times they hit me – except the chronic fatigue, even with 8-10 hours of sleep I'll still yawn and almost fall asleep during the day.
I want to enlist. I want to help my country and my fellow Americans, but I must know, should I start sending out applications to colleges?
** I meant to say "I'd" in the first paragraph not "if", sorry for the typo!
I don't know if EDS will definitely disqualify you from enlisting. This is more of a question for your recruiter as he'll be more familiar with the current entry requirements for the your type of enlistment.
EDS may not exclude you entirely, but it could. It sounds like your symptoms are fairly mild right now. However, military duties are tough on you physically. There is a risk that your condition could progress a lot faster in the military than if you had a less physically-demanding job. Because of this, if they don't accept you, it's probably in your best interest in the long run.
I definitely commend your desire to serve, but bring up these concerns with your recruiter. If he says to proceed, then do so. If you pass the medical exam, then we'll benefit from your willing service. If not, then you probably will be better off in the long run.
How do I claim EDS? Do I need to claim each joint affected or just EDS? I am also having trouble claiming Chari and Hydrocephalus. I can't find them in the 38cfr so I am not sure how to word them in my Nexus and statement. Thank you
My email is [email protected]
It is best to list EDS and then how it is affecting each body section separately:
– service-aggravated Ehlers-Danlos Syndrome
– decreased liver function due to EDS
– limited range of motion Left Knee due to EDS
– hypermobility Right Elbow due to EDS
Chiari malformations and hydrocephalus are rated on the symptoms that they cause, like nerve issues, mental symptoms, etc. The VA will choose the right code to rate them, but it is important to list all the symptoms that are caused by the conditions so that the VA can consider them.
Is it better for rating purposes to classify hEDS as a disease or a defect? In the past year, research has been published showing that hEDS and HSD are the same entity and involve chronic inflammation. Skin biopsies from both disorders show a fibroblast (typical collagen-producing cells) to myofibroblast (active in wound contraction) differentiation. This was absent in normal controls, cEDS patients, and vEDS patients. When conditioned media from hEDS or HSD cells was incubated with control cells, the control cells displayed the same myofibroblast differentiation and characteristics as the hEDS cells. This shows that a chronic inflammatory environment is behind the pathology, not solely the cells or genetics. This makes sense because there is often an inciting illness or injury that causes a drastic increase in hEDS symptoms. Does the board take current research findings into account? Would this help the case for rating hEDS/HSD? The paper I referenced is Zoppi at al., 2018: https://www.sciencedirect.com/science/article/pii/S0925443918300061
Yes, the Boards do try to take current accepted medical research into account, however, if it is a single study, it may not have large direct effects on the overall medical communities thinking. Ultimately, regardless of new research, the Boards must decide based on the laws they are regulated by. Categorizing it as a "disease" or "defect" will have no effect at all on how the condition is rated.
The real pertinent issue to rating is how the condition relates to military service. As an inherited condition, it can only be compensated in as much as military service aggravated it. The Boards determine the degree of aggravation based on current medical standards (x condition is expected to progress to x degree in x amount of time in x circumstances). If the condition progresses at a faster rate or to a more severe degree, it is assumed to be due to military factors and can be rated as such. So in the case of an inciting illness, was the illness a direct result of military circumstances, something the veteran would have been unlikely to have been exposed to in civilian circumstances? Etc.
Because so much of the rating of this condition is up to the best judgement of the rating authorities, it is never a bad idea to submit recent evidence like this paper that supports a claim.
I was find until I started receiving the Anthrax Vaccine, which I was given while receiving steroid injections after surgery. Shortly after I started getting severe joint pain and headaches. After the 4th ejection I was given a waiver from the vaccine. Since then I have had most of my collagen in my system depleted, detached retinas, have had both hips replaced, major shoulder surgery and have doctors put into my records that the vaccine may have accelerated the conditions, and then I was give the diagnostic of Ehlers Danlos syndrome. shortly after the vaccine issue the USAF put through 2 medical boards
I'm sorry to hear about your conditions.
The VA currently does not accept responsibility for "tainted" anthrax, however, if you can prove that your conditions were definitely caused by your anthrax vaccine, then the VA will rate it. The burden of proof lies with you, however, so you'll need to be able to show that your conditions are directly connected. NEXUS letters from your physicians will definitely help.
http://www.militarydisabilitymadeeasy.com/nexusletters.html
https://www.publichealth.va.gov/exposures/vaccinations-medications.asp
Are VA physicians allowed/prohibited/discouraged to wtite Nexus letters?
EDS Hypermobility type is *thought* to be primarily heritable since other types of EDS have known mitations-but hEDS does not have a known mutation and its heritable classification comes from both the other types being heritable and it often running in families. But what if many people are susceptible to having an inflamatory/vaccine/chemical/radiation exposure that leads to trigger EDS as an active disorder, compromising collagen and future production of it leading to the onset of symptoms as well as the acceleration of the collagen disorder causing dislocations/injuries and deteriorating health over a span of decades before being diagnosed. No family history, but each of 3 children born to such veteran having various obvious signs of EDS of unknown subtype-genetic testing for specific mutations having been delated. Of course the children are compensatable because no one eabts to open that can of worms, but what of the soldier who first had episodes of joint subluxing/locking in service continued to get worse to where 2 years in a physical therapist says Ehlers-Danlos but his commanding officer says "no, no family history its not EDS" so the solider continues to serve in a physically demanding job doing more damage, developing migraines, pvcs and Pacs of the heart, hurting their neck and back along with the knee and shoulder that led to EDS suspected but denied in service. Oh, besides getting shots for deployment for first Gulf War, this soldier was also stationed on an EPA superfund site base slated to be closed/cleaned up 2 years before and was closed 2 years after I left base 6mos early and transferred into the reserves because Active Duty had become too difficult.
Who do I get to write my nexus letter? Who is qualified to speak to that? What prescedent might there be?
Cant edit the above. But of course children are NOT compensatable
VA physicians can definitely write NEXUS letters if they are the main physicians treating the veteran's conditions. NEXUS letters should always come from the physician most qualifies and familiar with the condition, VA or not.
hEDS is considered a genetic condition, even though the exact mutation is not yet known. If the triggering cause was a military factor (exposure, physical labor, etc.), then you could prove that service aggravated the condition and qualify for disability in that way.
The physician that should write your NEXUS letter should be the one that officially diagnosed hEDS and knows your condition the best. Along with the NEXUS letter, you will need to submit evidence that supports your argument for service-connection. If you believe it was the exposure, then you need to find research or case studies that show that similar exposure is known to trigger EDS. If there isn't evidence of this sort, then your claim will more likely be successful focusing on a different cause for the service-aggravation. Heavy labor could be an option. Whatever evidence you can find that matches your service circumstances is the way to go.
If anyone else is looking at enlisting with EDS, I would recommend against it. One of the things that is recommended to avoid is running on pavement. This will seriously accelerate the deterioration the knees of most people with EDS. Guess what you do a lot of in the military. Service is noble, but I suggest finding another route as a lifetime of pain can't be compensated for with a VA disability.