Compensation for A Delayed Diagnosis of Ehlers-Danlos Syndrome

Hypermobility Spectrum Disorders

Compensation for a delayed diagnosis of Ehlers-Danlos Syndrome can result from a personal injury claim if harm can be proved. Many people are misdiagnosed or ignored by doctors when they show signs of this rare condition and may wait years for a proper diagnosis.

As a result, a delayed diagnosis may lead to long term health problems, emotional stress and loss. So, if you’ve had a delayed diagnosis you may be eligible for compensation if there was medical negligence.

While not every delay may be grounds for medical negligence, a below standard of medical care which led to a worsened outcome may be found to be negligence.

If you suspect this may have happened to you, Jefferies Claims can advise you on what to do next.

We partner with experienced lawyers who work on a ‘No Win, No Fee’ basis, which means you will only pay legal fees if your claim is successful.

Why Does Early Diagnosis Matter?

Ehlers-Danlos Syndrome (EDS) is a group of genetic conditions that affect the connective tissues in your body, the stuff that holds everything together. People with EDS often have:

• Very flexible (“hypermobile”) joints
• Soft, stretchy or fragile skin
• Frequent injuries like dislocations or bruising
• Chronic pain and fatigue

Some types of EDS, like vascular EDS, can even affect the blood vessels, making them more likely to tear, which can be life-threatening if not caught early.

So why does getting an early diagnosis matter? Getting an early diagnosis is important. It can lead to better pain management, physiotherapy, regular heart checks, and advice to prevent injuries.

If you’re misdiagnosed, or not diagnosed at all, you might end up with unnecessary surgeries, worsening symptoms, or even permanent disability.

Can You Claim Compensation for a Delayed EDS Diagnosis?

You may have a valid medical negligence claim if:

1. You were owed a duty of care (which all doctors and hospitals must provide).
2. That care fell below a reasonable standard — for example, they ignored clear signs or failed to refer you to a specialist.
3. You were harmed as a result — such as suffering avoidable injuries or worsening symptoms.

To win a claim, your legal team needs to show that if you’d been diagnosed earlier, your outcome would have been better. That might mean fewer dislocations, less pain, or avoiding risky surgery.

Signs That Your Diagnosis Delay Might Count as Negligence

Some examples where a late EDS diagnosis might lead to compensation:

• A GP dismisses your repeated joint dislocations as “just growing pains” or anxiety
• A specialist fails to refer you for genetic testing, even when symptoms are obvious
• You’re diagnosed years later and now need mobility aids or daily care
• You suffered a vascular event (like a ruptured artery) that could have been prevented

What Evidence Do You Need?

To support your claim, your solicitor will collect:

• Your medical records – showing symptoms, visits, and what doctors did or didn’t do
• Expert opinions – from doctors who can say the delay was avoidable
• Keep a diary – how your health, work, and daily life were affected
• Receipts or payslips – to show money lost on treatment, time off work, or adaptations at home

How Much Compensation Can You Get?

Compensation depends on how much harm the delay caused. It usually includes:

1. General Damages

Money for your pain, suffering, and how the delay affected your life.

2. Special Damages

This covers money you’ve lost or will lose in future. That might include:

• Physiotherapy or private treatment
• Mobility aids, braces, or wheelchairs
• Adaptations at home (like stair lifts or walk-in showers)
• Lost earnings
• Care costs (including help from family members)

How Do You Pay for a Medical Negligence Claim?

Most EDS medical negligence claims are done on a No Win, No Fee basis. That means:

• You don’t pay anything upfront
• If the claim loses, you don’t pay your solicitor
• If it wins, a capped fee is taken from your final pay-out

You’ll also be offered insurance to protect you in case you need to pay the other side’s legal fees (which is rare).

Is There a Time Limit to Claim?

The usual time limit is 3 years from:

• When the mistake happened or
• When you first realised your symptoms were likely due to negligence

There are some exceptions:

• For children, the clock starts on their 18th birthday
• If the person lacks mental capacity, the time limit might not apply

Even if you’re unsure when the delay occurred, it’s advisable to speak to a solicitor as soon as possible as evidence can be lost over time.

How to Start a Claim – Step by Step

1. Free Consultation – Speak to a solicitor about your story. They’ll check if you have a case.
2. Gather Evidence – Your solicitor gets your medical records and expert advice.
3. Send a Letter of Claim – This goes to the hospital or GP involved, explaining what went wrong.
4. Negotiate – Most claims settle without going to court.

Get Help Today

Living with Ehlers-Danlos Syndrome is hard enough, but suffering because doctors failed to spot it makes things even worse.

If you believe your diagnosis was delayed and it made your symptoms worse, you may be entitled to compensation to help with your care, treatment, and financial losses.

The sooner you act, the more evidence can be gathered, and the better your chances of a successful outcome.

Jefferies Claims can help you through the process of how to claim compensation. We work with highly experienced lawyers in this field who operate on a ‘No Win, No Fee’ basis. We will give you the support and understanding you need at this difficult time. 

Call us at 0333 358 3034 for a free no-obligation chat or visit Jefferies Claims Contact Us Page

This article provides general legal information and should not be construed as legal or medical advice. In all instances you should always consult with a medical professional around life expectancy questions.