***Guest post written by Disability Help and shared with permission. Medical content & information on Ehlers-Danlos syndromes by EDS Wellness.***
Ehlers-Danlos syndromes are a group of heritable connective tissue disorders that are caused by various genetic defects, typically in the collagen protein used to make our connective tissues, but sometimes in other connective tissue components. It is believed that both genetic and epigenetic mutations — both to the structure or function of collagen — play a role in the various types of Ehlers-Danlos syndromes. These disorders can cause a wide variety of complications throughout all body systems; Ehlers-Danlos syndromes are very much multisystemic disorders. Previously believed to be rare, recent research demonstrates that the prevalence of the Ehlers-Danlos syndromes and other hypermobility related disorders may be far greater than current statistics state.
“Each type of EDS is characterized by a distinct problem in making or using one of the types of collagen.” Collagen is the body’s most abundant protein and can be found in nearly every component of our bodies, from our ears to our eyes and mouth, to our heart, surrounding our internal organs and veins, connecting our joints, in our bones, and down to the tips of our toes. Collagen is a structural protein that provides both strength and elasticity to our tissues and allows our tissues to be stretched safely without damage or without being stretched past a normal range. The collagen protein under the microscope has the shape of a twisting helix, and stability for the collagen protein comes from the amino acids, hydroxyproline and proline. Basically, the Ehlers-Danlos syndromes are structural problems caused by defects to the “glue” that holds our bodies together.
There are currently thirteen recognized types of Ehlers-Danlos syndromes, and vascular Ehlers-Danlos syndrome (vEDS) is considered to be the most severe due to the increased risk of arterial, cerebral, and organ rupture at any age. Furthermore, additional Ehlers-Danlos syndromes are being discovered as more research is done and our understanding increases. Each EDS has certain identifiable physical traits and identifiable genetic mutation(s), except for the most common type, hEDS. However, most types of EDS share the common characteristic of joint hypermobility– joints that move in greater degrees than is considered ‘normal’ in the general population. Similarly, there are also various physical features of the skin that may be seen with the Ehlers-Danlos syndromes, such as any of the following: soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing, and atrophic scarring. Certain people show signs and symptoms that are more characteristic of other types of EDS because many have shared features and pathological issues, but having more than one type of Ehlers-Danlos syndrome is highly unlikely. Additionally, patients often also suffer with several comorbid conditions; hence, why, for many individuals, living with EDS can have a negligible effect on daily life or be seriously life-threatening.
If you have EDS and your symptoms are especially intense, you may not be able to maintain gainful employment. In that case, you could qualify for Social Security Administration (SSA) disability benefits. These monthly payments can help you meet your daily living expenses as well as cover the costs of medical treatment.
To read about other hypermobility related disorders, please visit ‘Joint Hypermobility, Hypermobility Related Disorders and Hypermobile Ehlers-Danlos syndromes’.
To read more about Ehlers-Danlos syndromes, please visit ‘What are Ehlers-Danlos syndromes (EDS)?’
***Please note that the above links to medical information on hypermobility related disorders and Ehlers-Danlos syndromes will be updated soon to reflect the recently updated diagnostic criteria, proper verbiage and disorder names, as well as recent research. Please see our link to Understanding the 2017 HSD & EDS Diagnostic Criteria for information pertaining to the clinical updates mentioned (also listed below).***
Available Disability Benefits
There are two types of disability payments available through the SSA. Each one provides a monthly cash payment and access to medical care for qualified applicants, but their respective financial eligibility criteria are markedly different.
- Social Security Disability Insurance (SSDI): SSDI is funded through payroll taxes, so it is intended for disabled workers and their dependents. You earn SSDI ‘work credits’ by paying Social Security taxes. After two years, recipients are eligible for Medicare.
- Supplemental Security Income (SSI): SSI is a means-based program intended for children, the elderly and those with limited financial resources. To qualify, your income must not exceed the -established threshold for your household size. Once their claim is approved, SSI recipients also receive Medicaid.
Medical Eligibility with Ehlers-Danlos syndromes
When assessing applicant eligibility, the SSA uses the Blue Book, a guidebook of disabling physical and mental conditions and their respective medical criteria. Ehlers-Danlos syndromes do not have a listing of thier own, but you can possibly meet a listing for an impairment attributable to the disorder. Common listing examples include:
- Major dysfunction of a joint
- Vision loss
- Aneurysm of the aorta
- Gastrointestinal bleeding requiring a blood transfusion
- Chronic infections of the skin
Applying for Disability Benefits
When you apply for SSA disability benefits for EDS, you must fill out a detailed application form and include supporting medical documentation such as:
- A physician’s report documenting your musculature condition, any reflex or sensory changes, and circulatory deficits
- CAT scans
- Radionuclear bone scans
- Cardiovascular test results
- Records of the treatment you have received, your response to it, any adverse effects, and the expected duration of the treatment.
Your treating physician will also complete a residual functional capacity (RFC) form, which details how EDS has impacted your ability to maintain gainful employment and even carry out normal daily functions. The SSA uses this information to determine whether or not your condition prevents you from doing the work you are trained and educated for.
In addition to submitting the completed application and RFC form, you must submit your household financial details and meet with a SSA representative if you are applying for SSI.
Receiving Benefits Without Meeting a Listing
Any applicant whose condition does not meet a listing may still be able to win disability benefits if they can prove that they lack the residual capacity to sustain ongoing employment. The SSA makes this determination by consulting your RFC form, which contains information about the work you have performed in the past and the mental or physical effort required to do that work again. If the SSA concludes that you no longer have the capacity to do that type of work or be trained for another occupation, you may be granted benefits under a medical vocational allowance.
Benefit Denials and Appealing the SSA
Unfortunately, it can be quite common to be denied on your initial application for benefits. However, it is possible to appeal your denial. You would be able to request an appeal within 60 days of your denial for a hearing with and Administrative Law Judge (ALJ). These hearings may be held in either in-person or remotely, and you have the right to legal representation during the process. Disability advocates and attorneys are able to do so and specialize in the appeals process.
If you choose to be represented by a disability advocate or attorney, they would be paid out of a portion of your disability back pay, up to 25% or $6000, whichever is lesser. These hearings usually take 17 months on average to be scheduled, so it’s not uncommon to receive multiple years’ worth of back pay if awarded benefits.
For more information about applying for SSDI or SSI when you are battling Ehlers-Danlos syndromes or other hypermobility related disorders, visit your closest Social Security Administration office, go to the organization’s website at https://www.ssa.gov/, or call 1-800-772-1213. Fighting this painful disorder can make life a daily challenge, but access to monthly cash payments and medical benefits will help you cope without worrying about your financial future.
To read more please visit https://www.disability-benefits-help.org/disabling-conditions/ehlers-danlos-syndrome.
– EDS UK’s Information on Disability page
– Chronic Pain Partners’‘People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding’
– ‘Multidisciplinary treatment of disability in ehlers-danlos syndrome hypermobility type/hypermobility syndrome: A pilot study using a combination of physical and cognitive-behavioral therapy on 12 women.’ (2013)