Thursday, May 10, 2018

Too Much EDS Awareness?

May is Ehlers Danlos Syndrome awareness month and in the two years since I was diagnosed, I've thrown myself into it fully each May.  With a shockingly small number of doctors who are EDS knowledgeable and most of the general public having never heard of it, raising awareness is a very important step towards furthering research for EDS.  

For many years, doctors have been very hesitant to diagnose Ehlers Danlos Syndrome because it is considered to be a rare disease, too rare in fact to diagnose or see a case of during their medical career.  However, the truth is that it's not rare, it's rarely diagnosed.  It's also a hereditary genetic condition which means that a parent who has it has a 50% chance of passing it on to each one of their children.  In the case of my family, I passed it on to all four of my children.  EDS is definitely not rare in my family or in many other families either.

In the two short years since my kids and I were first diagnosed with Ehlers Danlos Syndrome, I've noticed a huge increase in the awareness of EDS.  The EDS groups on Facebook are growing in leaps and bounds as more people hear about it and realize that this may be the answer to their many unexplained medical issues.  More doctors actu
ally know what it is even if they don't necessarily know how to treat it, and it's becoming more common for people to respond with, "I know someone else with that too!" when I tell them that I have it.  The Ehlers Danlos Society recently received an anonymous $1 million dollar donation to be used on research of the hypermobile type of EDS which is the most common type. The American Journal of Medical Genetics released new criteria for diagnosed hEDS in March 2017.  This is all huge, and we're making amazing strides.  It's exactly what I and others with EDS have been fighting for.

But I just can't get into EDS awareness month this year.  More and more, I'm seeing posts in my EDS Facebook groups from people who are experiencing roadblocks with doctors who refuse to take their EDS diagnosis seriously, especially if it didn't come from a geneticist.  As more people hear about EDS and realize that it might be the answer to their undiagnosed and unexplained medical issues, doctors are being inundated with patients asking for testing.

Doctors are starting to see EDS as the new fibromyalgia.  Like EDS, fibromyalgia is hard to diagnose, tests come back normal, and patients often appear fine despite complaining of severe pain and other issues.  Some doctors even question the validity of it as a real condition.  Now EDS is being put in the same category.  The ironic thing is that EDS is often misdiagnosed as fibromyalgia.  

So how do we combat this new roadblock in raising awareness for EDS?

I'm not sure.  I think that at this point, it has to be up to the medical professionals to properly educate themselves on EDS and how to treat patients with it.  They need to realize that not everyone with EDS looks the same, just as no two zebras' stripes are the same.  EDS is a spectrum and some people are severely disabled by it while others are barely affected at all.  Some doctors are under the impression that people "want the diagnosis" just so they can get on disability and get pain meds and that may very well be the case for a few, but for the vast majority of us, we just want to be understood and believed.  

Too Much EDS Awareness? What are your thoughts?
I wish I had a solution for this problem, but I have a feeling that it's going to get worse before it gets better.  In the meantime, hang in there, even if you can't find a doctor who believes you and know that we're all in this together.

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