Autism and Chronic Pain: Ehlers Danlos Syndrome

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Published 2023-06-08
The journey to a diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is often a long and challenging road. In this month of May, EDS and HSD awareness month, let’s explore why this is. Is it as hard as we are led to believe? And why are there so many barriers to finding out if you are indeed hyper mobile or have EDS?
We are going explore:

What EDS and HSD and their subtypes are and how they manifest, including hypermobility and other symptoms

What else can be experienced alongside?

Are neurodivergent people more likely to be hypermobile or to have an EDS?

How can you take care of yourself ?

How can we support children in school and at home?

AsIAm is Ireland's Autism Charity. We are committed to making sure autistic people nationwide are given the same chance for education, employment and participation in their community.
Find out more here:
asiam.ie/
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0:00 Intro
4:45 Katie Kerley Overview
5:48 What is Ehler-Danlos Syndrome?
8:09- Collagen
9:28 Common and Rare Symptoms of EDS
15:12 Zebra Factor- How Rare is EDS?
18:07 EDS Signs in Children
20:41 Is EDS a Spectrum?
21:56 Autistic Health
27:05 Getting an EDS Diagnosis
30:45 EDS Sensory Processing
32:29 Potentially Harmful EDS Treatments
42:43 Common Misconceptions about EDS
46:35 School and Work Supports
53:25 Angel's Story
1:03:14 Self Advocacy
1:10:37 Fatigue
1:11:53 EDS Pain is not Growing Pain
1:14:10 Coping Mechanisms for EDS
1:19:41 Medical Gaslighting
1:21:33 I Think I Have EDS?

AsIAm is Ireland's National Autism Charity. We are committed to making sure autistic people nationwide are given the same chance for education, employment and participation in their community.
Find out more here:
asiam.ie/
Subscribe to our newsletter:
eepurl.com/dJnuCX
Consider donating to help support our work:
asiam.ie/support-our-work/donate/




Let’s look at how to enable meaningful occupations and maintain joy in life.
Intro:

All Comments (15)
  • @SweetiePieTweety
    A realization they causes me concern and sorrows is the assumption so often is that “non verbal” can be due to a lack of intellect or neurological when an underlying condition such as hyper-mobility, connective tissue, mast cell disorders can lead to vocal muscle and nerve abnormalities that are not identified contributing to the inability to speak. This needs to be raised in awareness and research and diagnostics .
  • This was eye-opening, if not jaw dropping. Re: the connective tissue issues, the growing pains that I never seemed to grow out of, the braces/crutches/ace bandages/rollators/etc and so many other physical "supports" that kept me standing/walking/sitting/moving/dancing/skipping (though rarely running) that constantly flowed in and out of my life from a young age through teenage through Mama age and now through old age for various joint stabilization, pain relief, and omg all the hot and sometimes oven-burned towels my own Mama wrapped around my legs at night to help calm and quiet my screaming pain for years and years when little until 6th grade... and oh so many other things y'all mentioned that totally apply to my own unique but obviously connected experiences. My ASD diagnosis completely validated my brain and how it works but has never adequately explained or connected all my sensory integration and pain-pain-pain-painful "challenges," lol. Oooooh my goodness, what a bright new light you gals have been shining on my mind, memories, body and soul today. Way cool and very helpful, indeed!
  • @shirleypitts6927
    Hi from the U S. Thanks, this video validates what my daughter and I go through daily. Bad weather makes it worst, I think the Geometric pressure. Change of seasons. Its even worst if your vagus nerve is weak or damaged.
  • @CRUZ-ol2pd
    @1:11:53 growing pains... in the late 1960s St Joseph Children's Aspirin was marketed and our family doctor Dr Nina Kodres (German doctor) prescribed it for rheumatism of the knees and shins (our legs). NSAIDS are now known to cause the acceleration of cartilage degeneration. Imagine that.
  • @CRUZ-ol2pd
    When my son was born in the 1990s, the doctors recommended that I alternate between the childrens Acetaminophen and the childrens Motrin (NSAID). Later on in life my son has cartilage joint instability.
  • @Lionessliving
    Medical cannabis privately is the ONLY thing that has helped the pain. But its short lived.
  • @tomhan
    Great content I really enjoyed this , well done guys!
  • @andreawisner7358
    Dangerous incorrect information: thumb to wrist is forward, not backward. Pinky is backward 90 degrees, thumb to wrist is forward. Please educate yourself. Apparently a few people can bend their thumb back that far, but nobody should try because it is harmful. Also emotionally harmful to people when medical professionals don't know the criteria correctly and test them improperly, possibly ending up in a negative diagnosis and gaslighting.
    Also, 4 is hypermobile/EDS for older people, or 3 if qualifying based on alternative test.
    Also, the criteria keeps changing so you have to continue to update your knowledge.
  • @amandamills6181
    What complications from anesthesia? I'm trying to figure out if eds could explain why I had trouble breathing after surgery. I also had a really hard time waking up. Thank you for this presentation!
  • @Familylawgroup
    I also have a connective tissue disorder called Buschke-Ollendorff Syndrome with dermatofibrosis lenticularis. How might that interact with hEDS collagen divergence?