Life insurance with Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome is not one condition - it is a group of 13 recognised subtypes, each affecting connective tissue differently. The insurance outcome depends almost entirely on which subtype you have. Hypermobile EDS (hEDS), the most common form, is usually insurable. Vascular EDS (vEDS), the rarest and most serious, is extremely difficult to insure. Most insurers do not understand these distinctions, which is why working with a specialist broker who genuinely knows the difference is not optional - it is essential.
The short answer
Your EDS subtype determines everything. Hypermobile EDS (hEDS) is usually insurable for life cover with a small to moderate loading, depending on severity and associated conditions like POTS or MCAS. Classical EDS is generally insurable with a moderate loading. Vascular EDS (vEDS) carries a risk of arterial and organ rupture that makes life insurance very difficult to obtain - we will be honest about that. For all subtypes, associated conditions matter as much as the EDS itself. A broker who understands the difference between hEDS and vEDS is not a luxury - most mainstream insurers will lump all EDS subtypes together, and that costs you.
We know that many people with EDS have had frustrating experiences with insurers who do not understand the condition, who confuse subtypes, or who treat all EDS as if it were vascular EDS. We also know that getting a diagnosis in the first place often takes years of being dismissed by medical professionals. We take every EDS subtype seriously, and our partner brokers are specifically briefed on the differences between them. You should not have to educate your insurer about your own condition.
What insurers actually ask about EDS
When you apply for life insurance with Ehlers-Danlos Syndrome, insurers will ask a range of questions. The problem is that many underwriters do not have detailed knowledge of EDS subtypes, so the quality of the assessment depends heavily on how the information is presented. This is where a specialist broker earns their value.
Which subtype of EDS have you been diagnosed with?
This is the single most important question. Hypermobile EDS (hEDS), classical EDS (cEDS), and vascular EDS (vEDS) are assessed completely differently. If your diagnosis is simply 'Ehlers-Danlos Syndrome' without a specified subtype, or 'hypermobility spectrum disorder' (HSD), this needs to be clarified before application. An insurer who does not ask about subtype is not assessing your risk properly.
Has your diagnosis been genetically confirmed?
Vascular EDS and most classical EDS cases can be confirmed through genetic testing (COL3A1 and COL5A1 mutations respectively). Hypermobile EDS currently has no genetic test and is diagnosed clinically using the 2017 criteria. If you have a genetic confirmation, it provides clarity that helps the underwriter. If your subtype is clinically diagnosed, a letter from your specialist is valuable.
What symptoms do you experience?
Joint hypermobility and dislocations, chronic pain, skin fragility, easy bruising, and fatigue are common across subtypes. Insurers want to understand the day-to-day impact. Can you work? How often do you experience dislocations or subluxations? Do you need mobility aids?
Do you have any associated conditions?
This matters enormously. POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), chronic fatigue, gastroparesis, TMJ dysfunction, and chronic pain conditions are common alongside EDS. Each associated condition is assessed in addition to the EDS itself and may increase the loading or, in some cases, lead to exclusions on income protection.
What medication and treatment are you using?
Physiotherapy, pain management, beta-blockers for POTS, antihistamines for MCAS, and various pain relief are all noted. Opioid use indicates more severe pain and is viewed less favourably. The overall treatment picture tells insurers about severity.
Have you had any surgeries related to EDS?
Joint stabilisation surgery, spinal surgery, or vascular repair surgery all provide information about the severity and progression of your condition. Multiple surgeries indicate more severe disease. For vascular EDS, any history of arterial dissection or organ rupture dramatically affects the assessment.
Know your subtype? That changes everything.
Tell us your specific EDS subtype, any associated conditions like POTS or MCAS, and how your symptoms affect daily life. Our specialist brokers will give you an honest assessment based on your actual situation.
Get QuoteEDS subtypes and what they mean for insurance
The 13 subtypes of EDS vary enormously in their impact on health and life expectancy. Here is how insurers typically assess the most common subtypes our partner brokers encounter.
Hypermobile EDS (hEDS) and Hypermobility Spectrum Disorder (HSD)
Hypermobile EDS is by far the most common subtype, and it is the one most people mean when they say they have EDS. The hallmark features are joint hypermobility, frequent subluxations or dislocations, chronic pain, fatigue, and often a cluster of associated conditions including POTS and MCAS.
The key point for insurance: hEDS does not carry the arterial or organ rupture risk that makes vascular EDS so dangerous. While hEDS can be genuinely debilitating - and we do not minimise that - it is not associated with significantly reduced life expectancy in the way that vEDS is. This means life insurance is usually available.
Mild hEDS
Joint hypermobility with occasional subluxations, mild chronic pain managed with physiotherapy and simple analgesia, working full-time, no significant associated conditions. Standard rates to minor loading of up to 25%. Most mainstream insurers will offer terms.
Moderate hEDS
Frequent subluxations or dislocations, moderate chronic pain requiring regular medication, associated POTS managed with beta-blockers, some impact on daily activities but managing to work. Loading of 25-75% is typical. Several insurers will still offer terms at this level.
Severe hEDS with multiple associated conditions
Significant functional limitation, frequent dislocations, severe chronic pain (possibly including opioid medication), POTS, MCAS, chronic fatigue, unable to work or working very limited hours. Loading of 75-150% may apply. Fewer insurers will offer terms, but cover is still available from specialist market insurers. Income protection is likely to be excluded or declined.
Hypermobility Spectrum Disorder (HSD) is assessed similarly to mild-moderate hEDS. If you have an HSD diagnosis rather than hEDS, this may actually work slightly in your favour as it suggests you did not meet the full diagnostic criteria for hEDS.
Classical EDS (cEDS)
Classical EDS is characterised by very stretchy, fragile skin that bruises easily, poor wound healing, and joint hypermobility. It is caused by mutations in the COL5A1 or COL5A2 genes and can usually be confirmed genetically.
From an insurance perspective, classical EDS occupies a middle ground. It does not carry the arterial rupture risk of vascular EDS, but the skin fragility and wound healing issues are more pronounced than in hEDS. Surgical complications can be a concern.
Typical assessment
Life insurance is generally available with a moderate loading of 50-100%, depending on severity, surgical history, and associated conditions. Insurer selection matters - some underwriters are more familiar with classical EDS than others. A specialist broker can present your case to insurers who understand the distinction from vascular EDS.
Vascular EDS (vEDS)
We want to be completely honest about this subtype. Vascular EDS is the most serious form of Ehlers-Danlos Syndrome. It is caused by mutations in the COL3A1 gene, which affects type III collagen - the collagen found in blood vessels, the bowel, and the uterus. This creates a risk of spontaneous arterial dissection, organ rupture, and bowel perforation that is not present in other EDS subtypes.
Median life expectancy with vEDS is estimated at around 50 years, though this varies significantly between individuals and is improving with better surveillance and management. This reduced life expectancy is the core reason why standard life insurance is extremely difficult to obtain.
The reality
Most standard life insurers will decline vEDS applications. The unpredictable nature of arterial and organ rupture events makes traditional risk assessment very difficult. Some specialist or non-standard insurers may consider applications on a case-by-case basis, particularly for individuals with no history of vascular events who are under regular specialist surveillance. However, if terms are offered, they will carry very substantial loadings, and the sum assured may be capped.
What we can do
Our partner brokers will explore every available option, including specialist insurers, over-50s style guaranteed acceptance plans (which do not require medical underwriting but have lower payouts), and group schemes through employers. We will be upfront about what is realistically achievable rather than giving false hope. If standard cover is not available, we will explain the alternatives clearly.
Other EDS subtypes
The remaining subtypes (kyphoscoliotic, arthrochalasia, dermatosparaxis, cardiac-valvular, brittle cornea syndrome, and others) are extremely rare. Insurance assessment for these subtypes is done on a case-by-case basis. The key factors are the same: which organs or systems are affected, what is the impact on life expectancy, and how severe is the functional limitation. A specialist broker is essential for these rarer subtypes, as most underwriters will have little or no experience with them.
Associated conditions and how they affect your insurance
For many people with EDS, particularly hEDS, the associated conditions cause as much difficulty as the EDS itself - both in daily life and in insurance applications. Insurers assess each associated condition alongside the EDS, and the combined picture determines your premium.
| Associated condition | Impact on insurance |
|---|---|
| POTS (postural orthostatic tachycardia syndrome) | Very common alongside hEDS. Mild POTS managed with increased fluids and compression stockings has minimal impact. POTS requiring beta-blockers (propranolol, ivabradine) or fludrocortisone adds a small loading. Severe POTS causing frequent fainting or inability to work adds a more significant loading. |
| MCAS (mast cell activation syndrome) | Increasingly recognised alongside hEDS. Mild MCAS managed with antihistamines has minimal impact on life insurance premiums. Severe MCAS with anaphylactic episodes adds a more significant loading. The condition is still relatively new to many underwriters, so how the information is presented matters. |
| Chronic pain | Assessed based on severity and medication. Simple analgesia and physiotherapy are viewed neutrally. Regular opioid use adds a loading due to the risks associated with long-term opioid therapy. Chronic pain that prevents work is a significant factor for income protection. |
| Chronic fatigue | Common alongside EDS. Assessed similarly to standalone chronic fatigue syndrome. Mild fatigue has minimal impact on life insurance. Severe fatigue preventing work significantly affects income protection applications. |
| Anxiety and depression | Common in people living with chronic pain and disability. Assessed alongside EDS. Mild to moderate mental health conditions on standard medication add a small loading. Severe mental health conditions add more substantially. |
| Gastroparesis and GI dysfunction | Gastrointestinal problems are common in EDS. Mild symptoms have little impact. Severe gastroparesis requiring specialist intervention or causing significant weight loss adds a loading. Intestinal involvement in vEDS is assessed very differently due to perforation risk. |
| Craniocervical instability (CCI) / Chiari malformation | Less common but significant when present. Craniocervical instability or an associated Chiari malformation may add a moderate loading depending on severity. Surgical intervention (fusion) is noted and the outcome assessed. |
Realistic pricing expectations
These illustrative examples cover the range of EDS presentations our partner brokers most commonly see. Actual premiums depend on your full health profile.
| Profile | Cover | Indicative monthly premium |
|---|---|---|
| 32-year-old, hEDS, mild symptoms managed with physiotherapy, no POTS or MCAS, working full-time | 200,000 level term, 25 years | 9-15/month |
| 38-year-old, hEDS with POTS (on propranolol), moderate chronic pain, working with adjustments | 200,000 level term, 25 years | 16-28/month |
| 44-year-old, hEDS with POTS, MCAS, chronic fatigue, moderate pain on pregabalin, mild depression, limited work capacity | 150,000 level term, 20 years | 28-55/month |
| 40-year-old, classical EDS, moderate skin fragility, joint hypermobility, stable, no surgical complications | 200,000 level term, 20 years | 22-40/month |
| 35-year-old, vascular EDS (confirmed COL3A1 mutation), no history of vascular events, under specialist surveillance | 100,000 level term, 20 years | Likely declined by most insurers. Specialist options may offer limited cover at very high premiums. |
These are indicative figures based on typical market rates. They are not quotes. Actual premiums may be higher or lower depending on your full circumstances and the insurer selected. The vEDS example reflects the reality that standard cover is often unavailable for this subtype.
The honest answer
The EDS community has every right to be frustrated with the insurance industry. Too many insurers treat all EDS subtypes as if they were the same condition, which means people with hypermobile EDS are sometimes quoted as if they had vascular EDS, and people with vascular EDS are sometimes given false hope by insurers who do not understand what they are underwriting.
The truth is that hEDS, while often genuinely debilitating, is usually insurable for life cover at manageable premiums. The associated conditions - POTS, MCAS, chronic pain, fatigue - often add more to the loading than the hEDS diagnosis itself. Classical EDS is in a similar position, generally insurable with moderate loadings.
Vascular EDS is a different situation entirely, and we will not pretend otherwise. The arterial and organ rupture risk is real, and most insurers cannot underwrite that risk at any reasonable premium. If you have vEDS, we will explore every option available, but we will also be honest with you about what those options realistically are, rather than wasting your time with applications that will be declined.
What if you have been declined for life insurance?
A decline from one insurer does not mean a decline from all. This is particularly true for EDS, where insurer knowledge varies enormously. Here is what to consider.
Was your subtype properly communicated?
If you applied directly or through a non-specialist broker, there is a real possibility that your subtype was not properly explained to the underwriter. An application that says "Ehlers-Danlos Syndrome" without specifying hEDS may be assessed as if it were vEDS or an unknown subtype, leading to an unnecessary decline. A specialist broker will ensure the subtype distinction is front and centre.
Try a different insurer
Insurers vary significantly in how they assess EDS. Some have detailed underwriting guidelines for different subtypes. Others have minimal knowledge and default to a cautious position. A specialist broker knows which insurers have the best approach to EDS and can target your application accordingly.
Provide a specialist letter
A letter from your rheumatologist or geneticist confirming your specific subtype, current disease status, and prognosis can make a significant difference. This is particularly valuable for hEDS, where a specialist can confirm the absence of vascular involvement.
Consider alternative cover options
If standard life insurance is unavailable (most relevant for vEDS), over-50s style guaranteed acceptance policies do not require medical underwriting. These have lower payouts and typically include a waiting period before the full sum is payable, but they provide some level of protection. Employer group life schemes may also provide cover without individual underwriting.
Been declined? It may not be the final answer.
If you have been declined or heavily loaded, our partner brokers can review what happened and identify whether a different insurer or better-presented application could change the outcome.
Get QuoteIncome protection with EDS
Income protection is the most challenging insurance product for people with EDS, because the chronic pain, fatigue, and associated conditions can prevent work. The outcome depends on your subtype and severity.
Mild hEDS, working full-time
Income protection may be available, possibly with an exclusion for EDS-related claims. Some insurers will offer full cover with a loading if you have no time off work and no significant associated conditions. Insurer selection is critical.
Moderate to severe hEDS, or multiple associated conditions
Income protection is very difficult. Most insurers will exclude EDS-related claims or decline entirely. Short-term income protection (1-2 year benefit period) may be slightly more accessible than long-term cover. Employer group schemes may provide cover without individual underwriting.
Vascular EDS
Individual income protection is almost certainly unavailable. An employer group scheme is likely the only realistic option for income protection cover.
Put your policy in trust
Whatever your EDS subtype, every life insurance policy should be written in trust. Without a trust, the payout enters your estate and may face 40% inheritance tax and months of probate delays. Writing your policy in trust is free and takes 2 minutes. Our partner brokers set it up on every policy.
Read our full guide to trusts and estate planning
Frequently asked questions
Does hypermobile EDS affect life expectancy?
Current medical understanding is that hypermobile EDS does not significantly reduce life expectancy. While hEDS can be genuinely debilitating and affect quality of life substantially, it does not carry the vascular risks that affect life expectancy in vascular EDS. This is the primary reason why life insurance is usually available for hEDS at manageable premiums. The associated conditions (POTS, MCAS, chronic pain) are assessed separately.
I have a diagnosis of joint hypermobility syndrome rather than hEDS. How does that affect my application?
Joint hypermobility syndrome (JHS) and hypermobility spectrum disorder (HSD) are closely related to hEDS. From an insurance perspective, these diagnoses are generally assessed similarly to mild-moderate hEDS. In some cases, the lack of a formal hEDS diagnosis may work slightly in your favour, as insurers may view HSD or JHS as a less severe presentation. Be transparent about your symptoms and any associated conditions regardless of the specific diagnostic label.
I have hEDS and POTS. Will I pay significantly more for life insurance?
POTS alongside hEDS is very common and insurers who are familiar with EDS expect to see this combination. Mild POTS managed with lifestyle measures adds very little to your premium. POTS requiring medication (beta-blockers, fludrocortisone) typically adds a small additional loading on top of the hEDS loading. Severe POTS with frequent syncope adds more. The combined loading for hEDS and POTS is usually still very manageable for life insurance.
Do I need to tell insurers about MCAS?
Yes. You must disclose all known medical conditions. MCAS managed with antihistamines typically has minimal impact on life insurance premiums. Many underwriters are still relatively unfamiliar with MCAS, which is why having a broker who can explain the condition in context of your EDS is valuable. Non-disclosure of any condition can void your policy, so it is never worth the risk.
I have vascular EDS but no history of vascular events. Surely that helps?
It does help relative to someone with vEDS who has had arterial dissection or organ rupture. However, the underlying risk of a future event remains the core concern for insurers. Some specialist insurers may consider applications from people with vEDS who have no event history and are under regular surveillance, but the options are very limited and terms, if offered, will be heavily loaded. We will always be honest about what is realistically available.
My child has been diagnosed with EDS. Can I get life insurance for them?
Children's life insurance is a niche product in the UK. For hEDS or classical EDS, children's cover may be available. For vascular EDS, the same challenges apply as for adults. If you are looking for cover for a child with EDS, a specialist broker can advise on the limited options available in this area. It is also worth checking whether any family group scheme provides cover.
Will insurers ask for genetic test results?
Under the current UK Code on Genetic Testing and Insurance (the concordat between the Government and the Association of British Insurers), insurers cannot ask you to take a genetic test as a condition of insurance. For life insurance policies up to 500,000, you do not need to disclose existing genetic test results either. However, you must disclose your clinical diagnosis and symptoms. For policies above 500,000, you may be asked to disclose results for Huntington's disease only - EDS genetic results do not need to be disclosed regardless of the sum assured. This is a complex area and a specialist broker can guide you.
I was diagnosed years ago but my condition has worsened. Should I update my existing policy?
If you have an existing life insurance policy, it continues on the terms agreed when you took it out. You do not need to update your insurer about changes to your condition, and doing so will not affect your existing cover. If you need additional cover, you would apply for a new policy, and the new application would be assessed based on your current health. Your existing policy remains in force regardless.
Get specialist EDS life insurance advice
Tell us your subtype, your associated conditions, and how EDS affects your daily life. Our partner brokers understand the difference between subtypes and will give you an honest assessment tailored to your situation.
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