Ehlers-Danlos Syndrome impacts your joints and the heart. If you have it, you might want to know: can you get disability for Ehlers-Danlos syndrome? Let us find out in the article below.
Ehlers-Danlos Syndrome (EDS) could be a debilitating condition based on how it manifests. EDS is a genetic disorder that affects connective tissues, causing various physical ailments, including joint pain and cardiovascular problems.
An EDS diagnosis doesn’t necessarily guarantee you benefits; however, the extent of EDS is different from individual to person. Certain sufferers of EDS have no medical issues, while others suffer from severe disabilities.
EDS typically manifests as the result of a co-occurring condition with other diseases like Postural orthostatic Tachycardia Syndrome (also called “POTS”), Chronic Fatigue Syndrome, and Mast Cell Activation Syndrome (“MCAS”).
It is not easy to get disability benefits if you suffer from Ehlers Danlos Syndrome. Your doctor must document all the necessary medical details, mention the physical impairments it causes, and work with your attorney to avail you of the benefits.
What is Ehlers Danlos Syndrome?
This is one of the groups of genetic disorders that impact the connective tissues of your body, most notably your joints, skin, and blood vessels’ walls. Connective tissues are a mix of proteins and other substances that give durability and flexibility to the structural foundations of your body.
Patients who exhibit this syndrome generally have highly loose joints and fragile and stretchable and velvety skin. This could be a problem in the event of an injury that requires stitches because the skin’s elasticity isn’t enough to keep them.
Types of Ehlers-Danlos Syndrome
EDS can be of several types:
- Classical Type EDS (cEDS)
- Vascular EDS (vEDS)
- Cardiac-valvular EDS (cvEDS)
- Classical-like EDS (clEDS)
- Hypermobility Type EDS
- Periodontal EDS (pEDS)
- Arthrochalasia EDS (aEDS)
- Kyphoscoliotic EDS (kEDS)
- Dermatosparaxis EDS (dEDS)
- Spondylodysplastic EDS (spEDS)
- Brittle Cornea Syndrome (BCS)
Myopathic EDS (mEDS)
- Musculocontractural EDS (mcEDS)
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Can You Get A Disability For EDS?
Disabling Symptoms of EDS
If you’re trying to figure out if Social Security would think of your EDS as a disability, It is essential to evaluate the symptoms.
EDS is caused by structural protein deficiency within the body. The result is that people who suffer from EDS have hyper flexibility, slack joints, and a lack of skin elasticity.
Other signs of EDS can be:
- Muscle and joint pain;
- The bruising is easy, and the wound is not healing;
- Dislocations, sprains, or other joint injuries;
- Limitation in mobility because of joint injuries;
- Heart valve damage;
- Digestive difficulty;
- Visual impairment;
- Skin inflammations.
The most severe form of EDS is called Vascular Ehlers Danlos Syndrome. Patients who have VEDS have weak blood vessels and are more susceptible to bleeding, ruptures and death.
Symptoms of Vascular Ehlers Danlos
Every person’s experience of Vascular Ehlers-Danlos syndrome will be slightly different. Certain people may have all the signs, some may have just some signs, and others may have various symptoms. Certain people might not even have any outward signs in any way. Specific signs of VEDS are easier to spot in comparison to others. This includes:
- Transparent, fragile skin that has enhanced visibility of veins
- A distinctive facial appearance (thin lips, small jawline, thin nose, and eyes that are large or deep-set)
- The appearance of prematurely aged feet and hands (acrogeria)
- Hypermobility of small joints (“double-jointedness”)
- Gum recession, as well as the fragility
- Hip dislocation can be the cause of birth or clubfoot
- Tendons and muscle tears
- Keratoconus (cornea of the eye bulges outward, leading to thinning)
- Varicose veins with early-onset
- Easy or spontaneous bleeding that isn’t due to other causes
- The development of a carotid-cavernous fistula (sudden redness and engorgement within the eye)
- Eyes open or partially closed
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Applying for Social Security Disability with Ehlers Danlos Syndrome
The Ehlers Danlos Syndromes are a class of connective tissue disorders with a heritability that results from various genetic disorders, most commonly within the collagen protein used to create our connective tissue. However, there are also instances of other connective tissues.
There is a belief that epigenetic and genetic mutations -related to the collagen’s structure and function can be a factor in the different types of Ehlers Danlos syndromes.
These conditions can lead to numerous problems throughout the body system, and Ehlers-Danlos syndromes are multisystemic conditions.
Once thought to be uncommon, new research suggests that the incidence of Ehlers-Danlos syndromes and other hypermobility-related conditions could be much higher than the current estimates suggest.
Whether you are suffering from EDS or VEDS, there is no listing with the Social Security Authority for the same. However, if you can associate the condition with any other listing in the Blue Book, you may still qualify for benefits. For example, if you have joint dislocations due to EDS, you can find your listing under section 1.00 Musculoskeletal System.
What Evidence Do I Need To Prove That My EDS is A Disability?
Medical Evidence of EDS
If you evaluate your EDS claim for disability, objective medical evidence will have the most significant importance to the insurance company. Medical evidence refers to evidence provided by your medical providers and other specialists that proves your diagnosis, symptoms, and physical or mental impairments.
A large amount of medical evidence is essential to convince an insurance company that you’re disabled, especially since most people suffering from EDS can work. A simple statement from your physician that you’re “totally disabled” will not be enough to win your case. You might even need genetic testing in some cases
The medical evidence that supports your EDS claim may include:
- Proof of Diagnosis: EDS is diagnosed via genetic tests and tissue biopsies that can verify the diagnosis. If you have an ancestral background of EDS, which can be a reason for the diagnosis.
- Medical Records: Your medical records must be provided to your insurance company, which includes your results from any scans or lab tests. Insurance companies put a lot of importance on the results of tests, so it is essential to have these records in your record.
- Treatment Notes: The notes of your doctor’s treatment could be helpful when they’re legible and the doctor has performed well in describing your complaints and symptoms. It is essential to be included because the insurance company could simply refuse to pay when they suspect that you’ve not sought enough or frequent medical treatment to treat your EDS.
- Supportive Narrative From your doctor: A narrative report or questionnaire provided by your doctor that outlines the foundation of the EDS diagnosis, your symptoms, as well as the adverse effects of your medication, and limitations in your physical and cognitive abilities can be a big help in negotiating with your insurance provider.
- Functional Capacity Evaluation: A functional capacity evaluation is also advisable if it can be done safely. It’s a physical assessment that will assess your capacity to stand, sit and lift or carry, push, pull, and perform the other tasks you need to work on. Two days of testing could be beneficial in cases where fatigue is a significant reason for your disability, typically for EDS sufferers.
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Vocational Evidence of EDS
Evidence of vocational use links your cognitive and physical limitations caused by EDS to your capacity to fulfill your job duties. Vocational evidence may include the following items:
- Your schooling;
- Training qualifications;
- Employment background;
- Job Description.
If you need to show that you cannot perform your job, Your evidence of vocational ability should contain precise descriptions of your job that you have received from both you and your employer. A professional review of your work duties and your capability to fulfill these tasks is also recommended.
If you have to prove that you can’t perform any job, a vocational assessment of your abilities and available opportunities could be a great way to meet the requirements.
Frequently Asked Questions
Q1. Is hypermobile Ehlers-Danlos Syndrome a disability?
Ehlers Danlos Syndrome (EDS) can be an illness that is disabling, depending on how it manifests. EDS is an inherited disorder that affects connective tissues that can cause various physical ailments, ranging from joint pain and cardiovascular problems.
Q2. Will I end up in a wheelchair with EDS?
Certain patients suffering from EDS might require special mobility equipment, like a scooter or wheelchair or crutch, walker or cane to move. However, care must be taken to ensure that joints and other parts of the body that are affected by the condition aren’t hurt by shifting weight while walking, such as using a crutch or a cane.
Q3. What is the life expectancy of someone with EDS
The most commonly used EDS (classical classical-like and hypermobile) don’t significantly impact the life expectancy of patients. The symptoms can become severe with getting older as joints that have dislocated often may develop chronic pain.
Q4. Is ehlers-danlos syndrome fatal
Vascular Type Ehlers Danlos syndrome may cause weakness in the largest heart arterial (aorta) and the arteries that connect to different parts of your body. A rupture of one of these blood vessels could be fatal.
Q5. Can you live a full life with EDS?
EDS is not curable; however, most patients learn over time to manage it and live full and active lives. The daily management of the majority kinds of EDS is based on the proper type of exercises, physical therapy, and the practice of pacing. Additionally, you must get referrals for any other issues you may be suffering from.
Even if there were an official blue book specific to Ehlers-Danlospatients, applying for benefits is highly complicated, and only a few receive benefits on the initial application. This is why it may be beneficial to work with an attorney specializing in applying for the Social Security Disability benefits process. Disability lawyers can assist you in completing all eligibility requirements for applying and then presenting claims to the Social Security Administration.