Ehlers-Danlos Syndrome (EDS) is a rare but often severely disabling condition that can prevent you from performing your job duties. If you’re struggling with EDS symptoms and considering to apply for disability insurance benefits, this guide provides the essential information you need to strengthen your claim and protect your financial future.
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What is Ehlers-Danlos Syndrome?
EDS is an inherited genetic disorder that affects connective tissues in the body. More specifically, it affects the skin, joints, and blood vessel walls.
There are 13 known variants of EDS, as outlined the Ehlers-Danlos Society. They are:
1. Hypermobile (hEDS): Most common type with joint hypermobility, chronic pain, and no genetic marker yet identified.
2. Classical (cEDS): Features skin hyperextensibility, atrophic scarring, and joint hypermobility due to COL5A1/COL5A2 mutations.
3. Vascular (vEDS): Most serious form with risk of arterial rupture, caused by COL3A1 mutations.
4. Periodontal (pEDS): Characterized by severe gum disease, tooth loss, and joint issues.
5. Kyphoscoliotic (kEDS): Presents with congenital muscle weakness and progressive spinal curvature.
6. Spondylodysplastic (spEDS): Involves short stature, muscle hypotonia, and skeletal abnormalities.
7. Brittle Cornea Syndrome: Features extremely thin corneas vulnerable to rupture and hearing loss.
8. Arthrochalasia (aEDS): Marked by severe joint hypermobility and congenital hip dislocations.
9. Musculocontractural (mcEDS): Presents with congenital contractures and distinctive facial features.
10. Classical-like (clEDS): Similar to Classical EDS but without atrophic scarring.
11. Dermatosparaxis (dEDS): Characterized by extreme skin fragility and sagging.
12. Myopathic (mEDS): Features congenital muscle weakness with improving strength over time.
13. Cardiac-valvular (cvEDS): Primarily affects heart valves with milder skin and joint symptoms.
The most common symptoms seen by those variants are overly flexible joints, premature aging of the skin, and easy bruising. Other overarching symptoms include chronic pain, fatigue, organ fragility, gum disease, muscle weakness, hearing loss, vision issues, foot deformities, leg swelling, and heart valve insufficiency.
Key Steps to Build a Strong Disability Claim for EDS
EDS’s symptoms can significantly interfere with one’s daily life. They can even be so severe that they prevent one from working on a full-time. However, an EDS diagnosis and reported symptoms alone will not guarantee disability insurance benefits. Rather, you will need to demonstrate to your disability insurer that your symptoms prevent you from performing the main duties of your occupation.
Start by submitting sufficient medical documentation sufficient medical documentation with your disability benefit application. Include proof of your EDS diagnosis either via positive genetic testing or a treating physician’s determination following a physical examination.
Furthermore, write a statement indicating why, in your own words, you are unable to perform the duties of your job due to your EDS symptoms. Also, keep a diary-like symptom log to document your pain, fatigue, and difficulties. This log log is especially valuable given the episodic nature of EDS flare-ups.
Most importantly, provide your insurer with evidence corroborating your reported symptoms that details your functional limitations. Show how those functional limitations prevent you from performing your specific job duties. This evidence typically takes the form of physical assessments completed by your treating doctors. It can also be verified by the results of a functional capacity evaluation (“FCE”).
Common Reasons for Denial of EDS Claims
It is still possible for your disability insurer to deny your claim despite the well-known debilitating nature of EDS. One of the most common reasons insurers use to deny EDS claims is to assert that the claimant failed to submit proof connecting their EDS symptoms to their specific job duties. Likewise, some insurers will rely on an alleged lack of objective evidence to corroborate the claimant’s reported EDS symptoms.
Some denials of EDS claims can simply be attributed to the insurer’s unfamiliarity with EDS itself. In this circumstance, it is essential that you clearly communicate the variable and chronic nature of this rare condition.
DeBofsky Law Can Help
If your claim for disability benefits is denied, don’t panic. DeBofsky Law has plenty of experience assisting individuals with EDS apply for and secure LTD benefits. Our disability insurance attorneys use proven strategies and personalized legal support to navigate the appeals process and successfully appeal your insurer’s wrongful denial of benefits. Contact the knowledgeable attorneys at DeBofsky Law to prepare the strongest possible response to the denial of your claim.
Frequently Asked Questions About EDS Disability Claims
Can I qualify for disability benefits if I don’t have a diagnosis from a geneticist?
Yes, disability benefits for Ehlers-Danlos Syndrome can be approved without a geneticist’s diagnosis. Insurers must consider documentation from rheumatologists, orthopedists, and pain management specialists. A comprehensive medical history with detailed symptom documentation from any qualified physician can support a successful EDS disability claim.
How should I document EDS symptoms like pain and fatigue for disability claims?
Document EDS symptoms by maintaining a daily journal that records pain levels (1-10 scale), fatigue severity, activity limitations, and medication effects. Include specific examples of how symptoms affect work tasks, provide this log to your physicians to incorporate into medical records, and submit it with your disability application. Consistent documentation of symptom patterns strengthens your EDS disability case.
What should I do if my disability claim for EDS is denied?
If your EDS disability claim is denied: 1) Request the complete claim file immediately, 2) Review the denial letter for specific reasons, 3) Gather additional medical evidence addressing those reasons, 4) Contact a disability attorney with EDS claim experience, and 5) File your appeal before the deadline (typically 180 days for ERISA claims). Most EDS disability claims succeed at the appeal stage with proper legal representation and medical documentation.
