Ehlers-Danlos Syndrome

If you've been diagnosed with Ehlers-Danlos Syndrome, you've likely undergone numerous medical tests and endured a long wait for a diagnosis. In the following sections, we will explore how EDS (Ehlers-Danlos Syndrome) relates to Total Permanent Disability and Critical Illness insurance.

What is EDS?

Ehlers-Danlos Syndrome is a group of rare inherited conditions that affect connective tissue. Connective tissues provide support to the skin, tendons, ligaments, blood vessels, internal organs, and bones.

The impact on someone's life can vary depending on the type of EDS, ranging from relatively mild symptoms like fragile skin and increased joint mobility to severe symptoms such as vascular issues and severe dislocations.

Obtaining a diagnosis of EDS can be extremely challenging. Most individuals we've spoken to have endured 10-15 years of tests before finally receiving a diagnosis. Often, people feel isolated and not believed due to the rarity of the illness and limited available testing.

Can I Claim on My Total Permanent Disability Insurance with Ehlers-Danlos Syndrome?

The customers we often speak to can frequently make claims under their Total Permanent Disability insurance, a benefit found in most Critical Illness policies. To be eligible for a Total Permanent Disability claim, you typically need to meet these three criteria:

The symptoms of the illness must render someone unable to perform either specified daily living activities (3 out of 5 listed activities), be unable to engage in any occupation, or be unable to perform any suited occupation again.

  • The condition and symptoms must be permanent (with no expectation of symptom improvement to allow someone to perform any of the tasks in point one).
  • There must be evidence that the illness/condition is "total," meaning the symptoms are both present and persistent.
  • We have included a case study below, illustrating how we assisted a customer in making a successful Total Permanent Disability insurance claim.

It can often be challenging for people to claim on their policies due to the variability in symptoms and severity of Ehlers-Danlos Syndrome from person to person. We can help you navigate the complex claims process and provide dedicated, personalized support.

How Do I Claim on My Total Permanent Disability Insurance?

If you've been diagnosed with Ehlers-Danlos Syndrome, the first step is to review your policy to determine the type of Total Permanent Disability cover you have.

Your policy may cover the following:

Own Occupation: This means you are permanently unable to resume your current occupation.

Any Occupation: This implies any occupation related to your skills and experience. For example, if you were diagnosed with Ehlers-Danlos Syndrome and were employed in a manual labour role, such as a builder, you would not be expected to transition to an administrative role as it is unsuitable for your skills and experience.

Daily Living Tasks, Work Tasks, or Functional Ability Tests:

Examples of these tasks may include:

  • Walking 200 meters unassisted
  • Climbing stairs
  • Bending to pick up objects
  • Dressing or undressing
  • Maintaining personal hygiene
  • Getting in and out of bed or a chair unassisted
  • Handling general household duties such as cleaning, cooking, childcare, and shopping

Typically, you need to be unable to perform 2 out of 3 of these tasks, depending on your policy type and when you obtained it.

It's advisable to obtain policy details from your provider and then consult with your GP and consultant to determine if they can support your claim. If you need free information and guidance, you can reach out to one of our consultants.

Can I Get Insurance if I Have Ehlers-Danlos Syndrome?

This may greatly depend on the severity and type of Ehlers-Danlos Syndrome you have. There are 13 types of Ehlers-Danlos Syndrome, with some common ones being Hypermobile EDS, Classical EDS, Vascular EDS, Kyphoscoliotic EDS, and other Hypermobility spectrum disorders.

Each type of EDS may have different severities, and the coverage offered can depend on your personal circumstances. Your insurance company may contact your GP and consultant for more information about your condition.

Your insurance company may choose to:

  • Provide a policy at standard rates.
  • Charge you extra for your insurance.
  • Offer you coverage but exclude specific types of coverage, such as waiver of premium or Critical Illness/TPD.
  • Exclude certain conditions related to your illness, such as issues pertaining to musculoskeletal conditions.

View Case Study: Claiming on Total Permanent Disability Insurance with Ehlers-Danlos Syndrome