My daughter has just been diagnosed with Ehler’s Danlos at age 23, she was diagnosed with autism at age 16. Diagnosed with Ulcerative Colitis at age 20. This video was so packed with information. Thank you so much! I knew nothing of this syndrome, but knew something was wrong her whole life.
As someone who is highly suspected (and almost proven and diagnosed) with both EDS and Autism, I can only say that, yes I too have noticed all the connections between the two conditions. I‘m almost 42 now. I‘ve been struggling with hypermobility and connective tissue (respectively EDS) related health Issues and sensory issues (and others related to autism), but until about 2 years ago (when I started my gender transition and began my medical transition) nobody ever listened to my health problems. And only after I stumbled across both conditions in my vast research spree on the internet and asked my doctors to please investigate further, I‘m now in the process of getting diagnosed. I‘m on the waiting list to get an official autism diagnosis (the preliminary tests showed a 120% probability of being on the spectrum), and EDS is „almost“ diagnosed, i.e. I have 100% of the clinical symptoms and a genetic marker connected with EDS has been found on one chromosome. This theoretically shouldn‘t lead to an „outbreak“ of the condition, but my doctors believe that it might be a mutation that doesn‘t have to manifest on both chromosomes for EDS to manifest. You summed this up really well.
Thank you Evie for this helpful explanation. Have had issues with my hand for years following an injury and now my whole arm is affected. The other symptoms are familiar too, plus used to be double jointed as a kid. Yet haven’t got a diagnosis yet. EDS would explain so much!
I think I'm a mythical rainbow zebra, if EDS, ADHD and very likely ASD. Ehlers-Danlos (diagnosed 41yrs) took me almost a decade of certainty that I had it to get diagnosed. Decades of symptoms, and a lot of scary emergency department visits. Defintely ND with ADHD (diagnosed 31yrs) with suspected ASD (winning all the self- diagnostic tests from Embrace Autism - RAADS-R, CAT-Q, AQ-10, SQ-R etc) but I'm still waiting to get formally diagnosed. My occupational therapist and psychiatrist are certain I am autistic but they can't formally diagnose in Australia. So a stranger gets to attempt to diagnose me, and if I can't unmask that's going to be a battlefield. If EDS was so hard even with obvious markers like family history, Beighton Scoring and diagnostic imaging of dislocations, fractures, pnuemothorax etc - then how will my internal processing differences be dismissed? I hope it doesn't take as long as the EDS diagnosis, that was extra hard with neurodiversityv on top. I had to learn about in my own it for 10 years, question myself so much, and push to get in to see a rheumatologist who could diagnose, with a waitlist just to see her of 3yrs. So much hard work for 10 years. 4yrs in I was told by a well respected and published EDS physiotherapist who "wrote the book" on various subtypes of EDS that I definitely had EDS, and 6yrs in a cardiologist asked "have you heard of EDS, I'm almost certain you have it" It should have been picked up in childhood (I look at my physical eduction parts of my school reports) At the least it should have been raised when I had multiple pnuemothoracies in my early 20s, and it was seen as "interesting" that I had coincidentally presented with both my shoulders dislocated when I was getting diagnostic imaging of my lungs. Or when I had a "non-traumatic spinal fracture" that was full of trauma, but just happened without an exterior cause.
Where are you in Australia? I'm in Perth WA and I think for me to get diagnosed I think I just see a psychologist qualified in if and go over things I've had difficulties in growing up. I'm not sure how different it would be for you if you are elsewhere. Maybe it might be worth checking out with your GP? Please excuse me I've just read the bottom about the issues you had with your shoulders, everyone is different as are our experiences. I hope you decide to get the diagnosis, maybe it might help a bit and the NDIS too if you qualify.
I have ADHD, Mitochondrial dysfunction, EDS, mast cell activation syndrome, BPD, bipolar disorder, POTS, apparently a behavioral problem too, the list goes on. Every one of my biological siblings have autism. I’m positive I also have undiagnosed autism & all I want for my birthday this year is a test to confirm it
I was dx'd with autism and dyspraxia around age 5. Dyscalculia - 15. EDS - 17. Lupus - 20. POTS - 25. Crohns - 30. JME - 35. Genetic mutation DEE - 43 Its criminal my JUVENILE myoclonic epilepsy was not dx'd until my 30s 🤦♀️ I highly recommend genetic testing if you can. My genetic test answered lots of questions.
This is so interesting to me as someone who has autism, EDS, and is getting evaluated for epilepsy. I've met quite a few people with all 3 these past few days online. I also have a theory that they're all connected when they occur together.
Very interesting. I’ve known I’m hypermobile since I was a teenager, just never thought it was worth seeking a diagnosis until today that I’ve been struggling with a lot of back and shoulder pain since I got Covid. Could it be completely unrelated? Who knows. I think it’s worth exploring. Also yes, self diagnosed autistic if I’m allowed to say. I’ve never pursued a diagnosis, I’m just too scared to go to a doctor and just get invalidated all over again.
Though not officially diagnosed, it seems I have hypermobile EDS, along with Raynauds and marfan syndromes. My brother does not have these things, but is on the autism spectrum. My guess is this is how these genes have manifested differently in each of us.
There are a number of different research papers and studies on the links between autism and EDS (other neurodivergencies are less studied, but interest in potential links is growing). You can find some of the information at: 'The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders', Emily L. Casanova et al.: www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/ 'Neurodivergent people more likely to experience pain, due to hypermobility', Dr Jessica Eccles et al: www.bsms.ac.uk/about/news/2022/02-02-neurodivergent-people-more-likely-to-experience-pain-due-to-hypermobility.aspx 'EDS & Other Hypermobility Spectrum Disorders in ASD;. Autism Research Institute: th-cam.com/video/1A6Xd67ZBB8/w-d-xo.html
Following the new studies, in northern Ireland, nearly 8 percent of boys and 3.5 of girls were diagnosed with autism. Speaking of EDS...the first time I Heard of it was 2019 , rare desease day.
Yes my mum has severe ms obvously Asperger's as my grandfather surely had it to and his mother grandmother I have fybromyalgia had or eds Asperger's my so has Asperger's OCD hypomobility to all genetic no idea until 43
@@Catlily5 it’s hereditary Passover of Epstein bar virus, particularly aggressive strain that was injected into humanity 100 years ago via inoculations, it has nothing to do with genes. It’s a virus, the passes from generation to generation
@@Catlily5Genetics is the *mechanism* of heredity, so you can't really have a hereditary condition that's not genetic. Heredity was studied before genetics was understood, it tells us the "what", genetics tells us what's actually going on at the molecular level, the "why/how". EDIT: You *can* however have genetic conditions that are not hereditary. If a genetic condition causes sterility or fetal/childhood death, then it will only be seen where it pops up due to a random mutation and will never be passed on.
![Dysautonomia, POTS, & Autism [CC]](http://i.ytimg.com/vi/WpAW5DJWcwE/mqdefault.jpg)
Thanks for this Evie. As a fellow Zebra (rare disease sufferer) with EDS and autism, I though you explained it really well.
Hi what a good Video. I got heds and ADHD. Keep your Head up.
My daughter has just been diagnosed with Ehler’s Danlos at age 23, she was diagnosed with autism at age 16. Diagnosed with Ulcerative Colitis at age 20. This video was so packed with information. Thank you so much! I knew nothing of this syndrome, but knew something was wrong her whole life.
I'm in the process of connecting lots of dots... this was super helpful. Thank you!
Super short video with a lot of information about my condition. I think it sums up all important aspects. Thank you.
Diagnosed with EDS at 26, diagnosed with Autism and ADHD at 33
Do you have fybromyalgia
As someone who is highly suspected (and almost proven and diagnosed) with both EDS and Autism, I can only say that, yes I too have noticed all the connections between the two conditions.
I‘m almost 42 now.
I‘ve been struggling with hypermobility and connective tissue (respectively EDS) related health
Issues and sensory issues (and others related to autism), but until about 2 years ago (when I started my gender transition and began my medical transition) nobody ever listened to my health problems. And only after I stumbled across both conditions in my vast research spree on the internet and asked my doctors to please investigate further, I‘m now in the process of getting diagnosed.
I‘m on the waiting list to get an official autism diagnosis (the preliminary tests showed a 120% probability of being on the spectrum), and EDS is „almost“ diagnosed, i.e. I have 100% of the clinical symptoms and a genetic marker connected with EDS has been found on one chromosome. This theoretically shouldn‘t lead to an „outbreak“ of the condition, but my doctors believe that it might be a mutation that doesn‘t have to manifest on both chromosomes for EDS to manifest.
You summed this up really well.
Thank you Evie for this helpful explanation. Have had issues with my hand for years following an injury and now my whole arm is affected. The other symptoms are familiar too, plus used to be double jointed as a kid. Yet haven’t got a diagnosis yet. EDS would explain so much!
Have you got fybromyalgia symptoms ime diagnosed now all fell together what a fight
@@Truerealism747 Glad you got some clarity on it for you. Would need to investigate more about fibromyalgia for me, but interesting to consider.
I think I'm a mythical rainbow zebra, if EDS, ADHD and very likely ASD.
Ehlers-Danlos (diagnosed 41yrs) took me almost a decade of certainty that I had it to get diagnosed. Decades of symptoms, and a lot of scary emergency department visits.
Defintely ND with ADHD (diagnosed 31yrs) with suspected ASD (winning all the self- diagnostic tests from Embrace Autism - RAADS-R, CAT-Q, AQ-10, SQ-R etc) but I'm still waiting to get formally diagnosed.
My occupational therapist and psychiatrist are certain I am autistic but they can't formally diagnose in Australia. So a stranger gets to attempt to diagnose me, and if I can't unmask that's going to be a battlefield.
If EDS was so hard even with obvious markers like family history, Beighton Scoring and diagnostic imaging of dislocations, fractures, pnuemothorax etc - then how will my internal processing differences be dismissed?
I hope it doesn't take as long as the EDS diagnosis, that was extra hard with neurodiversityv on top.
I had to learn about in my own it for 10 years, question myself so much, and push to get in to see a rheumatologist who could diagnose, with a waitlist just to see her of 3yrs.
So much hard work for 10 years. 4yrs in I was told by a well respected and published EDS physiotherapist who "wrote the book" on various subtypes of EDS that I definitely had EDS, and 6yrs in a cardiologist asked "have you heard of EDS, I'm almost certain you have it"
It should have been picked up in childhood (I look at my physical eduction parts of my school reports)
At the least it should have been raised when I had multiple pnuemothoracies in my early 20s, and it was seen as "interesting" that I had coincidentally presented with both my shoulders dislocated when I was getting diagnostic imaging of my lungs. Or when I had a "non-traumatic spinal fracture" that was full of trauma, but just happened without an exterior cause.
Where are you in Australia? I'm in Perth WA and I think for me to get diagnosed I think I just see a psychologist qualified in if and go over things I've had difficulties in growing up. I'm not sure how different it would be for you if you are elsewhere. Maybe it might be worth checking out with your GP? Please excuse me I've just read the bottom about the issues you had with your shoulders, everyone is different as are our experiences. I hope you decide to get the diagnosis, maybe it might help a bit and the NDIS too if you qualify.
I have ADHD, Mitochondrial dysfunction, EDS, mast cell activation syndrome, BPD, bipolar disorder, POTS, apparently a behavioral problem too, the list goes on. Every one of my biological siblings have autism. I’m positive I also have undiagnosed autism & all I want for my birthday this year is a test to confirm it
What are your symptoms of.mitchronodrial.dyafunction
I have eds autism ADHD fybromyalgia CFS OCD ibs dyscalculia
Thank you for your story, I have Classical EDS, Epileptic and I am Autistic.
Thank you
I was dx'd with autism and dyspraxia around age 5. Dyscalculia - 15. EDS - 17. Lupus - 20. POTS - 25. Crohns - 30. JME - 35. Genetic mutation DEE - 43
Its criminal my JUVENILE myoclonic epilepsy was not dx'd until my 30s 🤦♀️
I highly recommend genetic testing if you can. My genetic test answered lots of questions.
Which gene mutation do you havenisnitnpart of eds genetic test
Whats jme
This is so interesting to me as someone who has autism, EDS, and is getting evaluated for epilepsy. I've met quite a few people with all 3 these past few days online. I also have a theory that they're all connected when they occur together.
this is so interesting! thank you for the video!!
Very interesting. I’ve known I’m hypermobile since I was a teenager, just never thought it was worth seeking a diagnosis until today that I’ve been struggling with a lot of back and shoulder pain since I got Covid. Could it be completely unrelated? Who knows. I think it’s worth exploring. Also yes, self diagnosed autistic if I’m allowed to say. I’ve never pursued a diagnosis, I’m just too scared to go to a doctor and just get invalidated all over again.
I think I may have just found out what’s going on with me. Recently got diagnosis of ASD, and I have super bad heat illness… it takes me out quickly.
Though not officially diagnosed, it seems I have hypermobile EDS, along with Raynauds and marfan syndromes. My brother does not have these things, but is on the autism spectrum. My guess is this is how these genes have manifested differently in each of us.
Is there a website for this research that has been done?
There are a number of different research papers and studies on the links between autism and EDS (other neurodivergencies are less studied, but interest in potential links is growing). You can find some of the information at:
'The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders',
Emily L. Casanova et al.: www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/
'Neurodivergent people more likely to experience pain, due to hypermobility', Dr Jessica Eccles et al: www.bsms.ac.uk/about/news/2022/02-02-neurodivergent-people-more-likely-to-experience-pain-due-to-hypermobility.aspx
'EDS & Other Hypermobility Spectrum Disorders in ASD;. Autism Research Institute: th-cam.com/video/1A6Xd67ZBB8/w-d-xo.html
Following the new studies, in northern Ireland, nearly 8 percent of boys and 3.5 of girls were diagnosed with autism. Speaking of EDS...the first time I Heard of it was 2019 , rare desease day.
Yes my mum has severe ms obvously Asperger's as my grandfather surely had it to and his mother grandmother I have fybromyalgia had or eds Asperger's my so has Asperger's OCD hypomobility to all genetic no idea until 43
My nickname in 5th grade was alien because I have heds (also autism but I didnt learn that until 7th grade)
❤❤❤
It’s not genetic, it’s hereditary
All hereditary diseases are genetic
Genetics is the study of heredity?
@@Catlily5 it’s hereditary Passover of Epstein bar virus, particularly aggressive strain that was injected into humanity 100 years ago via inoculations, it has nothing to do with genes. It’s a virus, the passes from generation to generation
@@Catlily5Genetics is the *mechanism* of heredity, so you can't really have a hereditary condition that's not genetic. Heredity was studied before genetics was understood, it tells us the "what", genetics tells us what's actually going on at the molecular level, the "why/how".
EDIT: You *can* however have genetic conditions that are not hereditary. If a genetic condition causes sterility or fetal/childhood death, then it will only be seen where it pops up due to a random mutation and will never be passed on.
Most of the variants have a genetic marker, with the exception of the hypermobile type.
Why are you conflating gay pride with neuro diversity, I find it stupid and insulting
she actually isn't, and if she was, what if she was gay and neurodiverse? the rainbow is colors for neurodiversity/a literal sticker.
also, disability pride month is now a thing btw.
@@akk6194 yea the word pride should not be included, neither should the rainbow, that's for the alphabet army