Ehlers-Danlos syndrome isn’t rare, it’s just rarely diagnosed. It can take an average of 10-12 years to be diagnosed with hypermobility-spectrum disorder or one of the 13 EDS sub-types. For me, it took for me to end up in a wheelchair, unable to walk after complaining of pain in my legs for 25 years.
I’ve written about my experiences – what works and doesn’t work for me, what I’ve learnt about EDS, the doctors who treat me, its connections with other conditions, my diet and so much more right here on this blog.
On this page, I list below all my relevant articles to Ehlers-Danlos syndrome and POTS just for easier navigation.
My Story – What I didn’t know – What I learnt:
My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
6 Things I Didn’t Know About Hypermobile Ehlers-Danlos Syndrome
The doctors who treat me:
The Doctors Who Treat My Ehlers-Danlos Syndrome, POTS & Fibromyalgia
My treatments:
My Diet for Endometriosis & Ehlers-Danlos Syndrome
My Experience: Using Kinesiology Taping for Ehlers-Danlos Syndrome (with video)
My Experience: Treatments to Manage Ehlers-Danlos Syndrome
My Acne Skincare Remedies – Endometriosis & Ehlers-Danlos Syndrome
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EDS’s connection with other conditions:
Are Ehlers-Danlos Syndrome & Fibromyalgia Connected?
My Experience: The Relation Between Endometriosis / EDS and Chronic Fatigue
The Never-Ending Head Pain: Status Migrainosus
From Migraine, to CSF Leak, to Brain Sagging – My journey
POTS & EDS:
Dysautonomia: How POTS Changed My Life
My (Re)Search: Why Does Sound Trigger Pain?
Other experiences:
How I Accepted My Mobility Aid. The Steps I Took.
Living in Mumbai With a Disability [Including London & NYC]
Spoonie Thoughts: Does Chronic Illness Change You?
How to Lose Weight After Being Stuck in Bed with a Chronic Illness | Disability
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Those are all the links that should help you get started in learning more about Ehlers-Danlos syndrome – especially that of a patient’s perspective.
If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.
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I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.