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It Was a Relief to Be Diagnosed with Ehlers-Danlos Syndrome

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3.7 from 3 votes
Wednesday, May 22, 2019

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You might think being told I had a rare and incurable disability in my twenties was very bad news, but after the grief cleared, it was great to finally have an answer for all my issues.

I've suffered gut issues, multiple dislocations, multiple sprains. I've had X-rays, MRIs, CT scans, blood tests, and my latest issue has been two cerebral aneurysms. My medical file is large.

The condition I have is called Ehlers-Danlos Syndrome (EDS). It's thought to be one of the least recognised conditions in the world. I was officially diagnosed with Ehlers-Danlos III, being the hypermobility type, at age 28. Hypermobility features joints that easily move beyond the normal range expected for that particular joint.

I believe approximately 300 people have officially been diagnosed with the syndrome in New Zealand, but we don't know the true figure for sure.

For me, having an official diagnosis meant that I had some guidance on what care I would need long term, and I could also help guide clinicians in my care.

There are 13 subtypes of this genetic condition. Hypermobility is the most common type. The issue we have is lack of awareness among clinicians.

In New Zealand, the average age of diagnosis is currently above 25 years but the symptoms of EDS can be present since birth. Most patients suffer with chronic pain, chronic fatigue, gut issues, sprains, dislocations, often in silence due to a lack of acknowledgement in the medical world for this invisible illness.

Unfortunately, due to the lack of medical acknowledgement, patients often suffer with anxiety and depression.

Most doctors and clinicians I have talked to about this condition often say they remember maybe discussing this condition once briefly, during their 4-7 years of study. Due to this, patients often need to become their own advocates and give information back to clinicians. Once a clinician understands EDS, it is easy to spot.

Ehlers-Danlos affects the body's connective tissue, collagen. Collagen is the sticky glue that holds our body together, it's all over our body. With EDS, every person presents differently, and usually we suffer with other issues associated with this condition such as Postural Tachycardia Syndrome, Mast Cell Activation Syndrome, Gastroparesis and Irritable Bowel Syndrome, to name a few.

May is Ehlers-Danlos Awareness month, and we are hoping to expand knowledge and start a discussion around this condition.

Most people diagnosed with EDS have very similar stories about their issues with doctors not understanding this condition. 

Bringing awareness to this condition will hopefully expand knowledge and make it easier to discuss. In turn this will help enable patients to be more proactive in their care and help them live a better life.

Visit www.ehlers-danlos.org.nz for more information.

Author: Kelly McQuinlan
Source: Stuff
3.66666666667
3.7 from 3 votes
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