Because with EDS, every bone is a funny bone.
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Welcome to our 2nd Funny Bone Newsletter!
John, CEO of EDS Awareness, and I decided with this new newsletter, we want to provide useful resources about all things EDS, chronic illness and disability. Specifically, we want to share the work of other advocates, podcasters, bloggers, journalists, influencers and more. So today, I am introducing you to some amazing people that help raise awareness and share our experiences!
From now on, every newsletter will feature a short writing from one of you, followed by newspaper articles on EDS, the work of fellow advocates, advocates that share resources on other chronic illnesses related to EDS, information on chronic illness and disability overall, research (with a specific topic each month), and a connect/event section.
So get in touch with me if you want to write a few words or have any resources you want to share with me.
Much Love,
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Stronger together
Jon Rodis
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Riding the Rollercoaster Together
Riding the rollercoaster of our health can be more going down than up,
the drops are pretty steep and the ride can be pretty rough,
but even though this experience is not of our choosing,
we somehow find the will to hold down that bar and hold on tight no matter what we are losing.
This strength we all have is hard to explain,
It is something that should be respected due to all our challenges including having low energy, restrictive diets, multiple testing and overall chronic and debilitating pain.
Even through all of this and more that we all share,
is the fact that no matter where we live, no matter who we have in our lives, we have a much larger family that truly understands this rollercoaster ride and does truly care,
for they are our connective tissue disorder family around the World that we all belong to and are indeed strong,
we are connected in far more than just genetics but by a shared fight, a shared mission and a stubbornness to let anyone or anything keep us down for long.
Wishing you all better physical and mental health days ahead!
By Jon Rodis
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Together, we aren’t rare! – ABILITY Magazine
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Six people speak out about challenges related to EDS; for example, misdiagnosis, child abuse allegations, gender and ethnic bias, and more.
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Instagram
Disability Advocate & Registered Nurse
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Podcast
Episode: Thriving with Chronic Pain with Beth Darnall, PhD
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Jeannie Di Bon
YouTube
Movement Therapist specializing in Hypermobility, Ehlers-Danlos Syndrome and Chronic Pain
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Ryan Brown
YouTube
Ryan talks to Dr. Bluestein about Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders
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Documentary Film
New documentary film about living with POTS
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Blog
Rea lives with ME and blogs about her experience on Instagram and her website.
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Blog
Audrey is a spoonie helping other spoonies to reach daily self-care goals with beautiful wellness tools.
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Spotlight: Chronic Illness & Disability
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About EDS, chronic illness, disability and more
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Research & Resources
Today: Autism & EDS
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EDS seems to be connected to autism
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Studies suggest EDS may be a subtype of autism [1]; EDS was found to be associated with a higher risk for autism spectrum disorders [2]; and another study found a strong association between hEDS specifically and attention deficit hyperactivity disorder (ADHD) and autism spectrum disorders (ASD) [3].
Further reading:
Sources:
[1] Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of personalized medicine, 10(4), 260.
[2] Cederlöf, M., Larsson, H., Lichtenstein, P., Almqvist, C., Serlachius, E., & Ludvigsson, J. F. (2016). Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings. BMC psychiatry, 16(1), 1-7.
[3] Kindgren, E., Perez, A. Q., & Knez, R. (2021). Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatric Disease and Treatment, 17, 379.
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Employment for autistic adults
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Someone from the EDS community, who is also on the spectrum recommended this job platform specifically dedicated to autistic employees.
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Laura Walker shared her insightful MA thesis on the topic ‘How inequality in healthcare exists with regard to autistic woman and hEDS.’
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Chronic Warrior Collective
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Join a community of chronically ill people around the globe.
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Let me know what you want to read here!
Connect with Karina
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