Continuing on the May EDS awareness theme lets talk about targeting this outreach effort. Who needs to know about EDS? Well everyone would be ideal. You’ve heard of Diabetes? Multiple Sclerosis right? Of course you have these diseases have been identified, researched, tests developed, markers found, and campaigns launched. If you have conditions such as these your no longer the odd “sickly” one in the eyes of society. EDS at this point has no such luxury even in the eyes of medical specialists.

Personally I think Primary Care Physicians (PCP’s) and Gastroenterologists (GI’s) should be the target of these awareness efforts. Why? Well for many especially in the US we are reigned in by Health Maintenance Organizations (HMO’s) managed health insurance. In such instances the “gatekeepers” our PCP’s are the sole arbiter of which specialists we can see, what medical/mobility equipment we are allowed, and to an extent what prescriptions we receive and how much will be covered. What good does the most educated and informed rheumatologist or geneticist do you if you aren’t allowed to see them under your coverage?

As for Gastroenterologists I believe they are imperative due to the amount of crossover GI symptoms associated with EDS. Symptoms that can strike suddenly or reach severity so rapidly it would be malpractice for a PCP not to refer out to a GI. GI symptoms are what first disabled me fully. I had been dealing with my joint issues to varying degrees for a decade at that point. Within three months I went from attending advanced college courses and working out ten plus hours a week to bed bound, tied to a vomit bucket, and to weak to stay conscious much of the day. Eventually spending enough time online and around the right set of people (which would have been faster if my gastroparesis would have been diagnosed correctly and promptly) that I first heard of EDS.

So back to the gatekeepers (PCP’s). If your primary care like many is unaware of EDS beyond an obscure two paragraph reference in a medical school text how would they know what connects hypermobility, velvety skin, visually prominent vasculature, and gastroparesis? If they are aware of EDS but uneducated they (such as my current) may find EDS such as hypermobility type “of no consequence”. Hmmm lets have them vomit, dislocate a rib and shoulder via sneezing and see if its of no consequence then huh. Ive found as I speak with more of the EDS community at large that in general only the vascular type is regarded as something tied to serious health issues which is a mammoth disservice to all connective tissue disorders.

If your PCP is uneducated or ill informed of the consequences of all types of EDS your unlikely to get a referral. If you do get a referral it is most likely to a rheumatologist though they should be educated in all disorders affecting the joints that is not generally the case. In that instance while I do believe in educating all that is a pure failure of specialist training in residency which would be another odyssey all together so back to the point.

If the physicians at the front lines of care are not capable of connecting the right dots the patient is left helpless and struggling on their own to find answers. We spend years being berated, neglected, sometimes outright abused, and seen as the annoyance until enough puzzle pieces land within reach for us to formulate an answer. Unless you happen to be fortunate in finances it can take decades to get anyone to believe you and send you to the specialists you cant afford on your own. That is an inexcusable injustice as health and answers should not be for sale.

I hope the efforts of myself and the EDS community at large can help turn the tide of awareness of this disorder. So the next generations and the currently un/misdiagnosed don’t have to continue to suffer as we have in waiting to receive the answers they deserve.  This disorder shouldn’t be a secret because there is no Dr.House coming to save us by going above and beyond (albeit rudely). We have to have the armor of knowledge to save ourselves!

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