New to Ehlers-Danlos Syndrome? This Post is for You!

This fall marks a year since I finally figured out why I am sick and why I never get better, only progressively worse!

Whaaaa!!!

Ever feel like all you do is whine and cry about your difficulties?

I do and I wish I could stop; Nonetheless, I still talk about my Chronic Illness Life with Ehlers-Danlos Syndrome all-day-long to anyone who will listen.

It’s kinda what I have going on 100% of the time, so please forgive me <3

Anyways, this is just a short post to share some videos I’ve been playing in the background of life for knowledge absorbing whilst distracting myself from the toils of my state of disease. Ever since my EDS discovery, much of my research time is spent learning the ins and outs of this genetic disease and the other pathological processes ongoing in my body. Sadly, I’ve only found a few docs who care enough to pour a little more energy into my case than required. It is up to me to learn all I can about Ehlers-Danlos Syndrome so I may better advocate for myself with the most up to date information. Most EDS types cause significant disability more often than not.

Misses in the diagnostic process delay treatment and cognisance for years, only making things worse. The Ehlers-Danlos Society is working tirelessly to educate practitioners and raise funds for more research and educational efforts to improve the quality of care available to the Medical Zebra patient. Believe me. you will hear more about Ehlers-Danlos Syndrome in years to come as genetics take center focus in millennial Healthcare advances!

The only thing uncommon about most EDS types is early diagnosis rather than the incidence of diagnosis itself.

New to Ehlers-Danlos Syndrome? This Post is for You! | Chronic Illness Life with Ehlers-Danlos Syndrome | onlyinthishead.com | pimage description: close up photo of a pretty bruinette with red lipstick on. Her hands are on her face and her facial expression is tense. In the background is a blurred woods scenery. The article tite, website name and address over text overlay on the photo]
New to Ehlers-Danlos Syndrome? This Post is for You! | Chronic Illness Life with Ehlers-Danlos Syndrome | onlyinthishead.com | pimage description: close up photo of a pretty bruinette with red lipstick on. Her hands are on her face and her facial expression is tense. In the background is a blurred woods scenery. The article title, website name and address over text overlay on the photo] | Image credit: pexels.com

Back problems, IBS, frequent strains, sprains and spasms?

You may to have EDS and not know it. Read on!

These videos are linked from John Ehlers-Danlos’ Youtube Channel. This channel provides a variety of webinars on Ehlers-Danlos Syndrome and associated conditions to educate patients and practitioners on diagnosis and management. There is corresponding documentation and text version available of these webinars at the EDS Awareness website.

Today, I am sharing my favorite EDS Introduction videos from this channel for newly diagnosed Medical Zebras and/or the undiagnosed potential Zebra searching for answers. These videos helped me a lot when I was first sorting through all this mess a year ago and I often watch these videos over again to further strengthen my knowledge base on EDS.

[Image Description: Zebra in the wild eating a bush of greenery with text overlay] | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | New to Ehlers-Danlos Syndrome? This post is for you! | onlyinthishead.com
[Image Description: Zebra in the wild eating a bush of greenery with text overlay] | Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome | New to Ehlers-Danlos Syndrome? This post is for you! | onlyinthishead.com | Image credit: pexels.com

#1 Dr. Alan Pocinki presents “Psychiatric Misdiagnoses in Ehlers-Danlos Syndrome:  When is Anxiety not Anxiety?”

This video is number one on this list for a reason.

All too often us Medical Zebras are herded into psychiatric management for EDS symptoms masquerading as a psychiatric diagnoses. EDS doesn’t show up specifically on routine blood tests. Many Zebras are told it is stress, anxiety  and depression. Even worse, the EDS patient might receive inappropriate labels of somatic or factitious disorders. My EDS journey included harmful misdiagnosis and instances when I was forced to undergo psychiatric evaluations to prove my symptoms weren’t factitious. 

Listening to this presentation helped validate these experiences and I think this a great place to start if one is having difficultly getting medical management due to poorly drawn psychiatric barriers. This webinar focuses on anxiety, but other diagnoses like bipolar, major depression and more are included.

#2 Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”

Now validated for all those times they told you it’s all in your head, it is time to get more familiar with Ehlers-Danlos Syndrome and its types!

Dr. Tinkle is a specialist in connective tissue diseases and well renowned for his work with EDS and Marfan Syndrome.  This video covers all the basics and then some. This is another one I re-watch every couple months to learn something new every time!

#3 Dr. Mitzi Murray presents “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

One of the most confusing things when I started my journey, was how to get to genetics.

Knowing what I know about insurance coverage from my years as a Registered Nurse, I knew ultimately I would require the genetic seal of approval for  Ehlers-Danlos Syndrome but I was met with so many barriers trying to get there. If it weren’t for this video, I might have never gotten there. Knowledge is power in getting an EDS diagnosis officially recognized in America. Even then, if the geneticist isn’t up to date on new research the appointment might be pointless.

Arm yourself with this informative webinar and then proceed to advocate for a geneticist!

I promise, it will go a lot better!

#4 John Ferman presents – “Support Groups for Ehlers-Danlos Syndrome”

Now that you understand EDS and know how to navigate Healthcare to diagnosis, it’s time to get connected with support!

John Ehlers-Danlos’ mission is to help EDS support groups get started across the world. This webinar explains the mission and helps Medical Zebras learn how to connect with other Medical Zebras, in person and virtually. Finding other Zebras was a powerful moment for myself because it validated my experiences and gave me a resource to compare my EDS. I am making the best friends online via EDS support groups and I am forever grateful for the chronic illness communities available.

No two zebras are alike but we’ve all got some variation of black and white stripes.

This video will point you towards where to look and how to get involved.  You’re not alone!!!

#5 Let’s Talk Symptom Management

These next videos cover the commonly associated conditions linked with an Ehlers-Danlos Syndrome diagnosis.

The mass effect certain cases of EDS possess is nothing to take lightly.

Better symptom management means a better quality of  life!

First off is Dr. Manu Sood presents “Gastrointestinal Disorders in EDS.” GI disorders are very close to my heart since this was the primary system going haywire throughout my teens, twenties and even onto my thirties. I shiver when I think of all the people with undiagnosed EDS and GI disorders ending up with procedures worsening matters.

Chronic pain is a plague of EDS more suffer from than not, myself included. I never recall a time when there was not pain from my joints, muscles, stomach or skin in some varying degree. Dr. Norman Marcus presents “EDS & Pain” is an awesome intro to EDS pain and management. Watching this a few times before advocating for pain management is likely to improve the outcome.

Back in 2005 I had delayed food hypersensitivity testing completed by order of my primary care physician.

What that testing showed was my body was saturated with the immunoglobulin IgE, which is responsible for mediating immune responses to allergens and parasites. The testing also revealed I was reacting to gluten, soy, corn, oats, certain spices, cod fish and several other things I was eating all the time.

Eventually, seven years later, I stopped eating these things. This improved my symptoms so much I thought I cured myself of my invisible, undiagnosed disease! Unfortunately, the improvement was short lived. I started having delayed and immediate hypersensitivity reactions to so many more foods I am left with almost nothing to choose from.

While I’ve not yet received official diagnosis for Mast Cell Activation disorder, I know this is the cause behind my food sensitivities, worsening symptoms and frequent eosinophil infiltration into my gut tissues. All the signs are there! Dr. Lawrence Afrin presents “Mast Cell Activation Syndrome” will get your familiar with all the basics when it comes to this frequent co-morbidity in Ehlers-Danlos Syndrome. 

The most obvious symptom of Ehlers-Danlos Syndrome is often the frequent partial and complete joint dislocations, joint stiffness and swelling, muscles strains, sprains, and spasms all with normal activity.

If you’re super lucky like me, you are also pretty bendy and unstable when it comes to manning the musculoskeletal system without accidental injury.

Most EDS patients with musculoskeletal problems are not surgical candidates so learning how to manage the damage done and prevent more problems than necessary keeps you ahead of the game. Don’t be like me and ignore these problems until it is too late. Here are several videos on the topic.


Thanks for reading New to Ehlers-Danlos Syndrome? This Post is for You!

My hope is to raise awareness of this seriously underdiagnosed, mistreated genetic disease process and help other Medical Zebras find their way to the component care we all deserve.

I would love to hear from other EDSers on more helpful EDS resources so comment below if you know of a video helpful to the cause!

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