Ehlers-Danlos Syndrome & Life Insurance

I have hypermobility syndrome, which is closely linked to Ehlers-Danlos Syndrome, and whilst they are not completely the same they are similar.

I know what is like to break, sprain and dislocate different parts of your body, by doing ‘normal’ everyday things. Jam jar lids are the bane of my existence!

When it comes to insurances, it’s important to know exactly what insurers will want to know about you, I know because I went through this and had difficulty arranging my insurances.

Things we need to know:

• What type of EDS have you been diagnosed with?
• When were you diagnosed?
• Do you take any medication?
• Have you required any surgeries?
• Do you have any heart or digestive symptoms?
• Do you need to use mobility aids?

These are some of the main questions that we will need to chat through. The type of EDS that you have and how strong your symptoms are, will have a bearing on the insurance companies that will be good for you to approach for life insurance.

Life insurance for people with Ehlers-Danlos Syndrome is generally available at non-standard rates, which means an increase to the premium loadings. But, this is not always the case and we have arranged cover at standard premiums before.

You are most likely to get standard terms for life insurance if you have type 3 Ehlers-Danlos Syndome. This depends a lot upon your symptoms and any complications that you experience due to the condition.

People with EDS that has been classed as type 1 or type 2, are most likely to see a premium increase and we may need to speak with a specialist insurer to get you the cover that you want. You may be able to get standard terms, but it is a good idea to be prepared that this is not often available.

The insurer that you apply to for life insurance will probably want to see a report from your GP about your health. This is quite a standard practice and should not cause a concern, it is arranged and paid for by the insurer, and we follow this every step of the way for you. You may feel that a GP report is excessive, but in the insurance world EDS is still seen as a “rare disease”.

You may find it useful to listen to a podcast that I host with an industry expert on insurance processes and underwriting, where we discuss rare medical conditions, insurance and raise awareness of EDS. But I must warn you that I do go off on a little rant about how this medical condition is perceived by insurers .

Critical illness cover pays out a cash lump sum of money, if you are diagnosed with a medical condition that is listed in the insurer’s claims set e.g. cancer, heart attack, stroke. 

Arranging critical illness cover when you have EDS can be a bit trickier than life insurance.

This is mainly due to the fact that Ehlers-Danlos Syndrome can impact upon the hearts functioning and other internal organs, which could lead to a higher risk of you making a claim on the policy. Even having mild POTS (postural tachycardia syndrome) could influence the insurer’s decision.

If you have had your heart scanned and checked, been told that everything is tickety-boo, then this can improve the chance of you getting personal critical illness cover on the standard market.

There are some critical illness policies that can be arranged on a group basis. This means that they are arranged by an employer for their staff. If you own your own company, or are in a position to speak about this with your employer, it could be a good option for you.

Group critical illness cover comes with a level of non-medical underwriting. This means that you will not be asked about your medical history when accessing the insurance, but there may be some exclusions and it’s important to speak with an adviser that can go through these with you.

There are also some specialist insurers that we can approach to get you the critical illness cover, if these other routes aren’t right for you.

Income protection pays you a replacement of your monthly income, if you are unable to work due to ill health.

Income protection is another trickier insurance to arrange. With the higher risk of breaks, sprains and potential heart symptoms, insurers see that having EDS makes someone more likely to place a claim for income protection.

I appreciate that this is annoying, but if I’m honest with myself and you, I do get it. I know that I’m more likely to seriously hurt myself, than someone that doesn’t have our bendy collagen, and insurance is all about risk.

Income protection for people with Ehlers-Danlos Syndrome is available with some specific insurance policies. The eligibility criteria for this is quite strict and might be dependent upon your employer setting up a company funded income protection plan.

This could be arranged through your employer, or your own company, and is known as a Group Income Protection scheme. Please contact us if you want to discuss this option.

The Seven Families is a charity-led campaign focused upon demonstrating the real value of income protection. Not just the money, but all of the extras that can come with these policies.

Part of their work was to help a woman named Melanie Knights, who had to give up her career as a midwife, when she was diagnosed with EDS. In this video, Melanie and her partner talk about the shock to the family when her income suddenly stopped.

An alternative to income protection is a policy called Accident, Sickness and Unemployment cover. This type of policy offers short-term income protection over a period of 12 to 24 months if you are unable to work due to disability, long-term illness or involuntary redundancy.

An accident, sickness and unemployment policy is not medically underwritten, meaning that the diagnosis of Ehlers-Danlos Syndrome will have no bearing on the terms of cover that you are offered.

You should be fully aware though that any claim that you place will exclude inability to work due to circumstances related to the Ehlers’ Danlos Syndrome.

Escaping the UK weather? It is always a good idea to make sure that you have good travel insurance in place. If you would like to get some quotations please visit our dedicated travel page here.