What is CLASSICAL ehlers danlos syndrome (cEDS)?

in january of this year i was diagnosed with vascular eds. we may not have the same type of eds but your contant is amazing to watch for anyone with any type of eds. it’s very informative but i never get bored. 💕

I have classical EDS and just got diagnosed this week!!! Always thought I had hypermobile eds until I found out I have classical! Thank you for this video❤️❤️

I was diagnosed with Classical EDS at the age of 61years and nine months

I have classical EDS and found it super interesting that you said it's generally considered more serious. My personal experience with doctors has been that they consider it less problematic and I have to prove that my joints are still hypermobile.

I really appreciate that you are educating yourself and then us about EDS types that are not directly relevant to you. You are being a voice for these rarer types and that is such a valuable gift for people on the internet, whether they have EDS or not. I also cannot wait for the more sciency video!

I have classical EDS I’m 41 ❤ I was diagnosed at birth and when the dr shook my dads hand he said that’s where he gets it from and that’s when my dad found out what he had he had never been told by his parents. X

Hey, Izzy! I have the COL1A1 mutation with classical EDS and osteogenesis imperfecta. I would love to connect with other cEDS folks, especially those with the COL1A1 mutation! Even when I was at the EDS conference in Baltimore, I didn’t meet anyone else with that specific mutation… Anyway, thank you for making videos and educating others about EDS and its comorbidities!

Well done on a clear and well edited video. I am "hEDS" as don't have COL gene mutation BUT I have a VUS for Beals syndrome which is another even rarer connective tissue disorder but I don't have Beals. Therefore I am, in the words of the genetics team, in "a no mans land ". FBN2 is fibrillar part of the collagen matrix and related to Marfans also has very high risk of aortic dissection and severe vascular issues like fibro muscular dysplasia and veinous stenosis, Mitral valve prophase, pulmonary etc spinal issues and CCI etc including horrible co morbidities like Chiari. I am in a large group of FBN2 VUS patients waiting for new classifications re marfanoid crossovers. It is a nightmare. On top of that my child was recently diagnosed with another autoimmune condition which means they can no longer eat without injecting for the rest of their life. The effects of connective tissue disorders are so multi systemic as it is called "connective" tissue for a reason. What's most painful of all, is the lack of doctors and public awareness about how utterly debilitating it all is.PS its ultra annoying re medical assistance as EDS is NOT rare. People think it is but its been proven to be one in possibly 2000 rather than 5

Hey my name is Kristin spelled the same way and I have cEDS too. I have a rare case because I have a one of each gene mutations from each parent. One of the mutations has been found to be insignificant, but they still don't know how it reacts with the one that is disease causing. The COLA51 mutation I have is only known to be found in 4 other people (one being my dad) I am so grateful I was able to have such great geneticist care. My local geneticist sent all my stuff to Peter H. Byers who officially diagnosed me and did the full genome. I also have hyper pots, CCI, AAI, OTC, CVID, TRAPS/USAID, Gastro, MCAS, SFN, mitro valve prolapse. I also am on the spectrum and have sensory issues. I have many other things as well. It is really hard finding docs who understand this type as they only seem to know hEDS, if they know EDS at all. My skin doesn't heal at all and many docs are afraid to treat me. Thanks for sharing. I would love to connect with other cEDS zebras. It is really hard seeing so much info about EDS being only hEDS info. And I often feel alone. I do love connecting with anyone with EDS though, I am not picky, all EDS sucks and I never want other zebras to feel like they are less effected or important.

I was diagnosed with hypermobile EDS in 2013 by the U.K. National diagnostic service. I was very grateful to them for identifying why I had PoTs after 16 years of no diagnosis. I had whole genome sequencing and now I have had the results, and I’ve got a variant with COL5A1. I think, ( I’m not entirely sure) that that means Classic rather than hypermobile? I’m not sure if there are other genetic markers needed for a diagnosis.

It's so interesting to hear the mutation names and such. I've never retained new information well, but every video of yours is making me giddy about learning, even if the info doesn't stick with me. Also, every video like this makes me yearn for my healthier days when I still could study, because even though my memory has never been good, I've always loved learning. These type of videos are one of my favorites from you! Your voice is also very soothing, and uplifting, can't wait for future videos! Lots of love from Finland<3

My cEDS was misdiagnosed all my life. Genetic testing in my mid 40s after I came completely "unglued" I also have Lupus. I have 2 daughters, both premature due to PROM and countless miscarriages and so much more. My first misdiagnosis was Purpura back in the late 80s. I carried so many mixed connective tissue disorders for the longest time. It wasn't until I started to climb the family tree did I really notice it. I am 49 now and my clinical diagnosis was instrumental in my ability to coordinate proper mobility assistance. I now use an electric wheelchair and they found an aorta dissection located at T2, the proper diagnosis opened up my coverage for my braces and other ALDs. My oldest has CP and my youngest has "Rheumatoid Arthritis" and Gastroenteritis which was caused from a bad surgery where they cut her veges nerve. My mom and one of her sisters have "Fibromyalgia" and the other sister is dealing with MS type symptoms. I'm sure all are cEDS misdiagnosed. Anyway, thank you for your research.

Hello! I just found out I have a cEDS gene (I tested after being diagnosed with hEDS). It's a lot to process & a lot to learn. Thank you for these videos!

I was already subscribed because I was diagnosed with hEDS last year but found out today it is actually Classical type. None of the articles were very clear and this helped a ton, thank you!!

Wow.... just watching Kristin talk made me realize that my story isn’t all that much different than hers. I was misdiagnosed with a blood cancer and placed on chemo pills. It was awful. I was eventually taken off of the chemo but not before I lost a good portion of my hair. I also have MCAS & cardiac valvular regurgitation but that cardiologist has yet to tell me which one. I’m currently undergoing more testing.

Sorry one off the main differences. Thanks in advance xx great video very Information and we'll delivered

I'm a man who has the mutation but i dont really have any hypermobility or hypotonia but i have the other symptoms and also a lof of the related things like cardiovasular issues, GI issues, and have extra Mass cell activation, nerological issues. I also have adhd and am probably on the spectrum.

I was diagnosed cEDS at 18 months old back in 1973 by the Shriners. There was no genetic test back then, and sometimes I wonder if I should get it. And other than my mom, I didn't meet another person with cEDS until I was 18. What a strange moment that was.

thank you izzy for sharing this and keeping awareness out there. i love how upbeat and happy you are or try to be most of the time. sending you so much love 💕 from oklahoma your friend xoxo 🦋🦋🌸🌸💜💜

This was great and very informative! Thank you to Kristin for sharing your story!