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New Study Reveals It Takes 10 Years To Be Diagnosed with hEDS!

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The study titled ‘Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndrome’ discussed diagnosis times with more than 500 patients with confirmed hEDS. The average time it took for these individuals to be diagnosed with hEDS was 10.39 years.

That’s not the worst thing, though. The study also reveals that patients with hEDS are given an average of 10.45 alternative diagnoses before being told they have hEDS.

What else are people with hEDS diagnosed with?

A total of 505 patients were involved in the study mentioned above. Surprisingly, 504 were given an alternative diagnosis first.

The diagnoses given to people with hEDS are as follows:

Health ConditionPercentage of Respondents
Anxiety75%
Depression68%
Migraines67%
POTS (Postural Orthostatic Tachycardia Syndrome)61%
Irritable Bowel Syndrome (IBS)57%

However, not everyone was willing to accept these co-diagnoses. Many of the participants refused to accept the diagnosis they were given and continued to seek a hEDS diagnosis.

The conditions most likely to be rejected by participants because they didn’t believe them to be true were:

Health ConditionPercentage of Respondents
Neurological Disorders95%
Multiple Sclerosis76%
Fibromyalgia67%
Bipolar Disorder62%
Ulcerative Colitis58%

What is the average time to be diagnosed with EDS?

The average time to receive a definitive diagnosis of hEDS can vary significantly from person to person. This study found that it takes 10 years to be diagnosed with hEDs, which is lower than the time previous studies have found.

In contrast to this study, a 2019 study reported a mean diagnosis time of 14 years. But 25% of people have to wait 28 years to be told they’ve got EDS.

Although I was diagnosed in my early 30s, I never sought out a diagnosis prior to this. I was lucky enough to see a geneticist that diagnosed me straight away. As a result, my kids have a diagnosis too and I’m grateful that they won’t have to wait 10 years for their diagnosis.

Is hEDS hard to diagnose?

In theory, hEDS shouldn’t be difficult to diagnose. The Beighton Score tests for hypermobility. Other factors are also taken into consideration, including family history and medical history.

But, as hEDS is a rare condition that presents with many different symptoms, it’s often missed. The lack of awareness among healthcare professionals, the absence of specific diagnostic tests, such as blood tests, and the variability and severability of symptoms further contribute to the difficulties in obtaining a timely diagnosis.

How to get diagnosed with hypermobile Ehlers-Danlos syndrome?

Firstly, you should speak to your family doctor. If they agree you’re a candidate for hEDs, you’ll see a geneticist or rheumatologist next. They may first run blood tests to rule out other problems that could be contributing to your symptoms, such as low vitamin D levels.

The diagnostic process involves a comprehensive medical history review, physical examination assessing hypermobility, joint laxity, and other symptoms. If the professional then rules out other potential conditions, they should consider hEDS.

Another option is to seek out a private diagnosis.

Why does it take so long to be diagnosed with hEDS?

Several factors contribute to it taking an average of 10 years to be diagnosed with hEDS. Some common reasons are:

  • Individuals delaying seeking help because they don’t have time or don’t want to make a fuss.

  • Misdiagnosis

  • Individual health complaints being treated rather than everything as a whole. For example, tiredness may be put down to a vitamin deficiency, pain due to age, and stomach issues due to IBS. But, if doctors assessed everything together, getting a diagnosis of hEDS would be easier and quicker.

How to speed up hEDS diagnosis

Of course, you don’t want to wait 10 years to be told you’ve got hEDS. So, here are some effective ways to speed up your hEDS diagnosis:

  • Educate yourself – Learn about hEDS symptoms, diagnostic criteria, and available resources so you become an informed advocate for your health.

  • Seek the right healthcare professionals – Find specialists who have experience in diagnosing and treating EDS, such as geneticists, rheumatologists, or EDS clinics.

  • Document symptoms – Keep a detailed record of your symptoms, their frequency, and any triggers so you can share this with professionals. This information can provide valuable insights during medical consultations. As hEDS is a genetic condition, speak to family members and document their symptoms and medical history too.

  • Prepare for appointments – Compile relevant medical records, family medical history, and a list of questions or concerns to discuss with your healthcare provider.

  • Seek a second opinion – If you encounter roadblocks or are unsatisfied with the initial diagnosis, consider seeking a second opinion from another healthcare professional familiar with hEDS.

  • Connect with support groups – Online or in-person support groups can provide valuable guidance, resources, and a sense of community throughout the diagnostic journey.

The sad truth is that the majority of people with hEDS wait at least a decade to be diagnosed. Here’s hoping that a change is just around the corner and that studies like this one will open medical professionals’ eyes to the need to better understand hEDs.

Author

  • Amy

    Amy lives with hypermobility spectrum disorder (HSD). She spent years not knowing what was wrong with her body, before eventually being diagnosed in her 30s. She has two young children - both of whom are hypermobile.

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