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Clinical Negligence Claims for Ehlers-Danlos Syndrome
Last Updated on May 5, 2026 by tanya
Clinical Negligence Claims for Ehlers-Danlos Syndrome
About Our Legal Expert: This content is produced under the oversight of Michael Jefferies, First Personal Injury Director, who brings over 30 years of legal experience.
Written by Tanya Waterworth, Digital Content Writer
Medical Negligence Red Flags
Clinical negligence claims for Ehlers-Danlos Syndrome (EDS) result from misdiagnosis or delayed diagnosis. This may be due to its complex nature and overlapping symptoms with other conditions.
However, if you or a loved one has suffered from medical harm due to potential negligence in diagnosing or managing EDS, you may be eligible to claim compensation.
Common Symptoms of EDS
Ehlers-Danlos Syndrome refers to a group of genetic connective tissue disorders that impact the skin, joints, and blood vessel walls. The most common type is Hypermobile EDS (hEDS), while more severe forms include Vascular EDS (vEDS), which can be life-threatening due to fragile blood vessels. Here are some common symptoms:
- Hypermobile joints (joint hypermobility)
- Chronic joint pain or dislocations
- Soft, velvety skin that bruises easily
- Digestive problems
- Fatigue
- Cardiovascular complications (especially in vascular EDS)
Early diagnosis is crucial to managing symptoms, avoiding further complications, and improving quality of life. Unfortunately, patients can often experience misdiagnosis or neglect due to a lack of awareness among medical professionals.
Clinical Negligence and EDS: What Can Go Wrong?
Because EDS mimics many other conditions, it’s often misdiagnosed as fibromyalgia, chronic fatigue syndrome, or anxiety disorders. When healthcare professionals fail to take a thorough history, dismiss symptoms, or delay referrals to geneticists or rheumatologists, it can result in clinical negligence if harm is caused.
Common Examples of Negligence in EDS Cases:
- Failure to refer to a specialist despite red flag symptoms
- Misinterpretation of genetic testing results
- Inadequate management of chronic pain or joint instability
- Dismissal of patient-reported symptoms as psychosomatic
- Delayed diagnosis leading to life-altering complications (e.g., arterial rupture in vEDS)
Red Flags: When Medical Treatment May Be Negligent
Not every poor medical outcome may be a result of negligence. However, the following red flags may indicate that there was a poor standard of care:
Repeated Refusals to Refer to a Specialist If your GP or primary care provider continuously downplays symptoms without specialist input, it could signal negligence.
Dismissal of Documented Family History A family history of connective tissue disorders should prompt further investigation.
Inappropriate Treatments Prescribing treatments that exacerbate symptoms (e.g., unnecessary surgeries, dangerous physical therapy) may be negligent.
Lack of Informed Consent You weren’t made aware of the risks of certain procedures or medications that worsened your EDS.
Significant Delays in Diagnosis If years passed before you received a correct diagnosis and this caused avoidable complications, you may also have grounds for a claim.
Can You Make a Clinical Negligence Claim for EDS?
Yes, you can pursue a claim if you believe your Ehlers-Danlos Syndrome was misdiagnosed, underdiagnosed, or poorly managed due to substandard medical care. For your claim to be successful, you must be able to show the following:
- Duty of Care
The healthcare provider owed you a legal duty to provide competent medical care (this is a requirement for all doctors and hospitals).
- Breach of Duty
That duty was breached which means the care you received fell below the accepted medical standard.
- Causation
The breach directly caused or contributed to your harm or worsening condition.
- Damages
You suffered quantifiable harm, whether physical, emotional, or financial.
When Can You Make a Claim?
You generally have three years from the date you became aware of the negligence to bring a clinical negligence claim.
Exceptions to the Time Limit:
- Children: The three-year limit begins when they turn 18.
- Mental Incapacity: No time limit applies while the person lacks mental capacity.
- Fatal Claims: If a loved one died due to negligent EDS treatment, you have three years from the date of death or post-mortem findings.
What You Need to Make a Claim
Obtain Medical Records
You’ll need to request your full medical history, including GP notes, hospital admissions, referrals, and test results.
Secure Expert Medical Opinion
A qualified medical expert will evaluate whether your care fell below an acceptable standard and if it caused harm. Your solicitor will be able to help you this this.
Build a Case
Your solicitor will gather evidence, including:
- Medical records
- Witness statements
- Expert reports
- Financial loss documentation (e.g., lost wages, travel expenses, care costs)
Your lawyer will attempt to settle with the NHS or private provider and most claims are settled without going to court. However, if settlement isn’t possible, the case may proceed to court.
What Can You Claim For?
If your claim is successful, you may be entitled to compensation for:
- General Damages: Pain, suffering, and loss of amenity
- Special Damages: Financial losses, including medical expenses, lost wages, care and assistance, travel and accommodation and adaptive equipment.
How Much Compensation Could You Receive?
The amount varies depending on the severity of the injury, duration of symptoms, and financial impact. As each case is unique, your solicitor will be able to provide an estimate regarding your case and potential compensation.
Contact Us
Ehlers-Danlos Syndrome is often misunderstood, but that doesn’t mean you have to accept substandard care. Claiming compensation can help you to access better care and recover financial losses.
If you believe you may have a claim, contact First Personal Injury today to explore your options for securing the compensation you deserve. Our team is here to help you navigate the claims process and we work with lawyers who operate on a ‘No Win, No Fee’ basis. Call us on 0333 358 2345 or contact us online.