I have hEDS, and I'm the first in my family to get a diagnosis. My mom and my two sisters have many symptoms, which I told my geneticist during my evaluation. He felt that was enough to diagnose me!
I was the first one diagnosed in my family, later two aunts, two cousins and my grandma were also diagnosed with hEDS. They had no ideia what it was, it was a very interesting family reunion telling everyone to go to the doctor
I was the first one to be diagnosed, but my dad and brother both have a lot of markers. Mine just had more prominent comorbidities (POTS, Gastroparesis, Raynouds, etc) that we were finally able to piece it all together with the help of my amazing new rheumetologist (which was initially supposed to be a consult for fibromyalgia)!
EDS runs on my paternal mother's side of the family, although most of these relatives were never officially diagnosed. It is looking like our family has the kyphoscoliotic kind. Every single one of us has it to a varying degree! Crazy to see the same symptoms in all of us!!
My step-brother has it too (hEDS), which means my dad is the carrier. I have 2 other siblings from my dad, who are not symptomatic. This fits the 50/50 statistic pretty well lol
ahhh yessss the high school punnet square times. I'm so glad it was clear when breaking it down...genetics is so complex and I was worried it'd be confusing
Great video, as usual, Izzy! 👍😊 Can you please do a video about how EDS can cause symptoms of anxiety and depression? My geneticist said that it tends to be one of the most common symptoms out of all the forms of EDS. Apparently, not many patients are made aware of this. I think it really needs to be addressed. 💖🦓 Thank you! 🙏
This is great information! My parents and I were all wondering how it was inherited, you explained it in a very easy-to-understand way. I have the video bookmarked to send to them tomorrow. Thank you for the amazing content!
Also my daughter is already showing lots of signs of the hypermobile Ehlers-Danlos like I have. Before she started gymnastics she was already able jumping in the middle splits and literally is like a little coturtioninist
Izzy, I just want to take this chance to thank you for all you do here on TH-cam. I was diagnosed with hypermobile EDS last week and your videos were a huge part of my journey to a diagnosis. 💕
I asked the ethics question, thanks for covering it :) One day Izzy you will be doing a similar video for hEDS, I cannot wait for that day! Just knowing what gene or mix of genes are responsible for a condition makes you feel so much more informed about your body and choices to make, and what to look out for in your children. Thanks again for choosing to spread your knowledge and passions with the world, I hope to be able to do the same one day, TH-cam videos are a fantastic resource.
I should send this to my mom. We realized my hypermobility issues (probably hsd but i have an older diagnosis) are from her side of the family and she's gotten so upset feeling like my pain and other problems are her fault
Hey I just want to thank you for what you do on here :) I started watching your videos when I did my own research of what might be going on with me since doctors weren't much help. I realised that I might have EDS and found a good GP who helped me get to specialists so I could get everything checked out and to rule out other possibilities Needless to say, among other things I do have EDS :) Your videos have prepared me for that diagnosis and getting past the stage of "oh shit, why me" The thing is that life has always been like this so putting a label on it isn't going to change anything but it does feel good to be able to tell people "hey this is what's going on" I feel less like I'm just "crazy" as many doctors try to tell you if they can't fix you with a pill or surgery. So thank you very much, I know you don't know me but even though we've never met you've helped me a lot
My mom and dad are the reason I have EDS, my mom had Osteogenesis Imperfecta and from a book I read the gene that is responsible for OI is also responsible for Classical EDS. I don’t know what type my dad would have but he would have some type.
It would be interesting to know how pregnancy would go having EDS. I wonder if it would be harder. Just thinking of this when you were mentioning having kids. Thanks for the videos they are so helpful💕.
The increased estrogen will likely make your hips dislocate more. Anyway, this has been addressed in the Facebook groups. Some people felt better during pregnancy (increased blood volume) and some felt worse
I had normal pregnancies - 3 - but the pain was unreal after about 5 month onward. Due to the extra pressure on joints. And I had 8 lb babies and only gained 25-30 lbs total each time.
I'm 27 years old and have had chronic pain and ankle instability for years and it's gotten worse since childhood so planning to go to my primary care physician. I have other classic symptoms of Ehlers Danlos syndrome. I have used an ankle brace for my right ankle that's unstable and weak and KT tape.
Thank you so much for this content. I have HSD and both my kids are showing some signs so I’ve been super curious how the genetics would work since I’ve been told it is hereditary.
I got my sticker from your etsy. I love it 💙 great video.. I just found out that you can subluxate your hand tendons and that I have the trifecta of pots, Eds and mast cell. Your videos have really helped me advocate for myself. I dislocated my knee at 13 it was my worst dislocation and now it just subluxes. ❤
Ahh so happy you got the sticker! I'm so glad my videos have helped you advocate for yourself and that you've been able to figure out the cause of your symptoms.
Love these informative videos so much. I just want to know everything. So I have some questions about the different gene mutations of the different types. I know you have covered it really basically in a different video, but more detail would be awesome, like what the specific mutations are if you know them. Also, I saw that you had put a picture up a while ago of a news thing about maybe finding a specific mutation for hEDS, do you know any more about what mutation that is? In fact if you know of any paper references that would be great :-) on the subject of subluxations, omg my shoulder. Do you have any specific advice for specific joints? Omg this could be a whole series lol. I desperately need some help with my shoulder, I’m clicking it back into place about 20 times a day 😞. Loving your videos, thank you! 😁👍🏻 Oh also, I think I have hypermobility from BOTH my parents, but i’m wondering if it’s a different gene in each case which is why no one else in my family has problems even though lots are hyper mobile. But what genes could possibly be causing this! When you qualified as a genetic counsellor I’m flying to the states so you can test me lol :-)
Hey! Your videos have been super helpful for me. Can you do video on the topic of bladder issues with EDS? I have heard they can be related but I’m unclear on how
On my mom's side of the family having premature babies run in the family I was the only one born 3 months early and the only one with a disability I have cp
(Not EDS that I know of yet, but they’re looking into it for me…) Funny about the eye color thing: I have brown eyes & my husband has dark green eyes… our son has brown eyes, but our daughter has gorgeous big Blue eyes! I never thought we could have a child with blue eyes based on what I learned in school, but since my father & his mother had blue eyes - I guess it skipped a generation for her blue eyes 🤣
Hi Izzy . , Thank you for helping people and my heart is so heavy and your soft spoken words helped me today already. Is there any way you. An make me a few sticker or similar ? I don’t speak much online but at times I do text too much at times and I am sorry for that . Have you seen Dr . Artaaal in Florida? Any info or if there’s a video about talking with the Genetics? I would love to get a few of your stickers :) that would be perfect 🤩 happy Day to everyone . Stay blessed and pray for this sinner . ( me )
I sublux every day. My fingers usually cause the most grief. But the metal finger splints (ring ones) can only be ordered by a specialist where I am and I don’t even have a diagnosis!! Idk what to do about it. They sublux when I hold my phone, hold a pen or basically do anything. I have an ankle brace to help with my ankle but have nothing else to help me. My doctors don’t believe me. I fit the criteria for EDS. Even if I have a hyper mobility disorder my doctors should still believe me. I have sinus tachycardia but the cardiologist said it COULD be POTS but he is unsure. I also think I have gastro paresis. I’m on medication for it from my cardiologist but it doesnt help fully. My doctor refuses to test me even though I’ve had gastrointestinal problems since I was born. I see a chiropractor who helps my pain so much and I see a physiotherapist. But I definitely need something for my fingers.
I’m not diagnosed (Idt I meet the 2017 criteria anyway but seem to have “at least” HSD) but as I was looking into I found out my dad was super hypermobile with symptoms as a kid, my little sister is hypermobile and has suspicious symptoms, and my nephew is diagnosed with joint hypermobility & symptomatic, and his mom (my sister lol) has a ton of the same symptoms I do. tl;dr my genes seem sus
I was supposed to go to physical therapy 2 years ago and go to a geneticist 4 months ago to get the blood test but my mom will not make an appointment I have concerns that I have vEDS and I don’t know how to get my mom to realize how serious that could be and how early treatment could help she also doesn’t realize how much pain I am in all the time no matter how I sit or stand I am just in constant pain and when I have subluxations I don’t really know what to do
Just a heads up - my Physiotherapist (who is EDS aware) is strongly against people using KT tape without knowledge of what they're doing. One, skin sensitivity in EDS- means you're exposing yourself more often than needed to the tape and adhesive which you could develop an allergy to - meaning when you really need it, you may not be able to use it Two- like all things medical , you're risking more harm that good. KT has been awesome for me, and it has lessened my subluxations a tonne but just make sure you know what you're doing, is my advice.
Genetics is actually more complex then that. It's a recipe not a blueprint. So while in general your points are valid, in actuality it's not that straight forward. You can inherit the gene, have it be dominate and still not show symptoms. Or the other way around, depending on just how it's actually expressed by the RNA inside each cell. While this is rare, it happens with both eye color and hair color. Like a lot of science, it's either over simplified in high school, or they just didn't know what is known now. This is part of the reason hEDS has been so hard to tie to any specific gene or sets of genes. It may have as much to do with RNA and DNA.
Nope, none of my family have any of this. My aunt does have a little hypermobility, like the hand sign but nothing else. I was always extremely flexible and had popping, crackling joints as a kid, really bad neck pain since elementary school, and ran like a duck, and I did dislocate my collarbone and rib in maybe my teen years. I would have to crack every single joint in my body all day long to get I guess stiffness or pain? relief, but I never really experienced true continuous pain and any regular subluxations and dislocations other than those rare incidents until after I took an antibiotic in March 2019. Ever since then my whole body just crumbled. Any time any part of my body moves it will sublux or dislocate in every joint. I have to wear sleeves and bracing everywhere everyday. I am not really mobile right now. Everything changed for me. Just because you may feel like you have a mild case, your whole world could just change in an instant one day. It literally was night and day. I don’t believe heds is totally inherited. I know my geneticist said environmental factors also could attribute. I know someone personally who also was affected after an antibiotic, as well as tons of literature available regarding the subject and even with vaccine use. I’m not anti-VAX, or anti-medication, but there is something seriously troubling affecting numerous people and I seriously feel like it’s all being labeled as EDS. I do not think it’s based totally on a genetic basis, I believe you can have a genetic predisposition and something of foreign substance or make up does not agree with certain bodies at all. That is why the more commonly known antibiotics like fluoroquinolones now have a black box warning for people with connective tissue disorder. But, there are many that do not have this labeling which are affecting people negatively. More research really must be done. I’m really not surprised more young people nowadays are being affected. Look at the toxic environment we are subjected to, such as the hormones, GMO’s etc. in our foods. This wasn’t how it used to be. We just don’t know what’s the true cause, or what initiates the flare. This should not be happening. I would not wish this upon anyone.
Does anyone else in your family have EDS??
I have hEDS, and I'm the first in my family to get a diagnosis. My mom and my two sisters have many symptoms, which I told my geneticist during my evaluation. He felt that was enough to diagnose me!
I was the first one diagnosed in my family, later two aunts, two cousins and my grandma were also diagnosed with hEDS. They had no ideia what it was, it was a very interesting family reunion telling everyone to go to the doctor
I was the first one to be diagnosed, but my dad and brother both have a lot of markers. Mine just had more prominent comorbidities (POTS, Gastroparesis, Raynouds, etc) that we were finally able to piece it all together with the help of my amazing new rheumetologist (which was initially supposed to be a consult for fibromyalgia)!
EDS runs on my paternal mother's side of the family, although most of these relatives were never officially diagnosed. It is looking like our family has the kyphoscoliotic kind. Every single one of us has it to a varying degree! Crazy to see the same symptoms in all of us!!
My step-brother has it too (hEDS), which means my dad is the carrier. I have 2 other siblings from my dad, who are not symptomatic. This fits the 50/50 statistic pretty well lol
Wow bringing me back with the punnett square! I think you did a great job of breaking it down. Thank you this is a great resource!
ahhh yessss the high school punnet square times. I'm so glad it was clear when breaking it down...genetics is so complex and I was worried it'd be confusing
Lol I learned in 7th grade
Can I take a moment to thank you! You are doing so much for the EDS community! Your videos have helped me identify my comorbidities. ❤️❤️
Thank you
Izzy: I used to sublux my knee really often, like 6 times a year.
Me, who subluxes my knees every time I crouch: *shocked pikachu face*
Omg are you okay
I feel you! Some days, my knees sublux multiple times a day😂
Great video, as usual, Izzy! 👍😊 Can you please do a video about how EDS can cause symptoms of anxiety and depression? My geneticist said that it tends to be one of the most common symptoms out of all the forms of EDS. Apparently, not many patients are made aware of this. I think it really needs to be addressed. 💖🦓 Thank you! 🙏
This is great information! My parents and I were all wondering how it was inherited, you explained it in a very easy-to-understand way. I have the video bookmarked to send to them tomorrow. Thank you for the amazing content!
Glad it could be helpful!
i would love a detailed video on the actual types and which are autosomal dominant vs recessive!! super great video izzy
My eldest daughter was 1st diagnosed at 20, then myself and my son and youngest daughter.
We also have Chiari, POTS, MCAD and tethered cord.
Also my daughter is already showing lots of signs of the hypermobile Ehlers-Danlos like I have. Before she started gymnastics she was already able jumping in the middle splits and literally is like a little coturtioninist
Izzy, I just want to take this chance to thank you for all you do here on TH-cam. I was diagnosed with hypermobile EDS last week and your videos were a huge part of my journey to a diagnosis. 💕
I asked the ethics question, thanks for covering it :) One day Izzy you will be doing a similar video for hEDS, I cannot wait for that day! Just knowing what gene or mix of genes are responsible for a condition makes you feel so much more informed about your body and choices to make, and what to look out for in your children. Thanks again for choosing to spread your knowledge and passions with the world, I hope to be able to do the same one day, TH-cam videos are a fantastic resource.
I'm really hoping the genes will be found soon. I CANNOT WAIT for the day when I can make a video about hEDS genes and inheritance
I should send this to my mom. We realized my hypermobility issues (probably hsd but i have an older diagnosis) are from her side of the family and she's gotten so upset feeling like my pain and other problems are her fault
Your videos have been helping me understand a lot about the syndrome. Thanks so much Izzy, you are doing a great job!!
I'm so glad my videos could be helpful!!
Hey I just want to thank you for what you do on here :) I started watching your videos when I did my own research of what might be going on with me since doctors weren't much help.
I realised that I might have EDS and found a good GP who helped me get to specialists so I could get everything checked out and to rule out other possibilities
Needless to say, among other things I do have EDS :)
Your videos have prepared me for that diagnosis and getting past the stage of "oh shit, why me"
The thing is that life has always been like this so putting a label on it isn't going to change anything but it does feel good to be able to tell people "hey this is what's going on"
I feel less like I'm just "crazy" as many doctors try to tell you if they can't fix you with a pill or surgery.
So thank you very much, I know you don't know me but even though we've never met you've helped me a lot
My mom and dad are the reason I have EDS, my mom had Osteogenesis Imperfecta and from a book I read the gene that is responsible for OI is also responsible for Classical EDS. I don’t know what type my dad would have but he would have some type.
Ordered your holo zebra cloud sticker a few days ago on Etsy. Can't wait to get it!
Thanks so much! I'm excited for you to get it!!
It would be interesting to know how pregnancy would go having EDS. I wonder if it would be harder. Just thinking of this when you were mentioning having kids. Thanks for the videos they are so helpful💕.
The increased estrogen will likely make your hips dislocate more. Anyway, this has been addressed in the Facebook groups. Some people felt better during pregnancy (increased blood volume) and some felt worse
I had normal pregnancies - 3 - but the pain was unreal after about 5 month onward. Due to the extra pressure on joints. And I had 8 lb babies and only gained 25-30 lbs total each time.
thank you for this!!!
My Dr diagnosed me hEDS but even other people did they thought I was Classic? Cincinnati
I wonder if your doc will decide to do testing in the future to see if it's another type :)
Excellent video thanks for sharing 🙏🙏💯💯 great information
Glad it was helpful!
Just ordered your holo sticker 😁 going to put in the back window of my car 😁😊 excited! ❤🦓
Ahh thanks so much! I'm sure it'll look adorable!
I'm 27 years old and have had chronic pain and ankle instability for years and it's gotten worse since childhood so planning to go to my primary care physician. I have other classic symptoms of Ehlers Danlos syndrome. I have used an ankle brace for my right ankle that's unstable and weak and KT tape.
I love your teaching.
thank you!!
Thank you so much for this content. I have HSD and both my kids are showing some signs so I’ve been super curious how the genetics would work since I’ve been told it is hereditary.
I gotta say you know your stuff! You are super pretty too!
I got my sticker from your etsy. I love it 💙 great video.. I just found out that you can subluxate your hand tendons and that I have the trifecta of pots, Eds and mast cell. Your videos have really helped me advocate for myself. I dislocated my knee at 13 it was my worst dislocation and now it just subluxes. ❤
Ahh so happy you got the sticker! I'm so glad my videos have helped you advocate for yourself and that you've been able to figure out the cause of your symptoms.
Love these informative videos so much. I just want to know everything. So I have some questions about the different gene mutations of the different types. I know you have covered it really basically in a different video, but more detail would be awesome, like what the specific mutations are if you know them. Also, I saw that you had put a picture up a while ago of a news thing about maybe finding a specific mutation for hEDS, do you know any more about what mutation that is? In fact if you know of any paper references that would be great :-) on the subject of subluxations, omg my shoulder. Do you have any specific advice for specific joints? Omg this could be a whole series lol. I desperately need some help with my shoulder, I’m clicking it back into place about 20 times a day 😞.
Loving your videos, thank you! 😁👍🏻
Oh also, I think I have hypermobility from BOTH my parents, but i’m wondering if it’s a different gene in each case which is why no one else in my family has problems even though lots are hyper mobile. But what genes could possibly be causing this! When you qualified as a genetic counsellor I’m flying to the states so you can test me lol :-)
Hey! Your videos have been super helpful for me. Can you do video on the topic of bladder issues with EDS? I have heard they can be related but I’m unclear on how
Thank you for the info!!!
Thank you for watching!
On my mom's side of the family having premature babies run in the family I was the only one born 3 months early and the only one with a disability I have cp
(Not EDS that I know of yet, but they’re looking into it for me…) Funny about the eye color thing: I have brown eyes & my husband has dark green eyes… our son has brown eyes, but our daughter has gorgeous big Blue eyes! I never thought we could have a child with blue eyes based on what I learned in school, but since my father & his mother had blue eyes - I guess it skipped a generation for her blue eyes 🤣
Hi Izzy . , Thank you for helping people and my heart is so heavy and your soft spoken words helped me today already.
Is there any way you. An make me a few sticker or similar ?
I don’t speak much online but at times I do text too much at times and I am sorry for that . Have you seen Dr . Artaaal in Florida? Any info or if there’s a video about talking with the Genetics?
I would love to get a few of your stickers :) that would be perfect 🤩 happy Day to everyone .
Stay blessed and pray for this sinner . ( me )
you can check them out here!! www.etsy.com/shop/IzzyKornblau/edit?ref=edit_trust_header
Great video!
I sublux every day. My fingers usually cause the most grief. But the metal finger splints (ring ones) can only be ordered by a specialist where I am and I don’t even have a diagnosis!! Idk what to do about it. They sublux when I hold my phone, hold a pen or basically do anything. I have an ankle brace to help with my ankle but have nothing else to help me.
My doctors don’t believe me. I fit the criteria for EDS. Even if I have a hyper mobility disorder my doctors should still believe me.
I have sinus tachycardia but the cardiologist said it COULD be POTS but he is unsure.
I also think I have gastro paresis. I’m on medication for it from my cardiologist but it doesnt help fully. My doctor refuses to test me even though I’ve had gastrointestinal problems since I was born.
I see a chiropractor who helps my pain so much and I see a physiotherapist. But I definitely need something for my fingers.
Childhood Patella Dislocation GANG
😉
I’m not diagnosed (Idt I meet the 2017 criteria anyway but seem to have “at least” HSD) but as I was looking into I found out my dad was super hypermobile with symptoms as a kid, my little sister is hypermobile and has suspicious symptoms, and my nephew is diagnosed with joint hypermobility & symptomatic, and his mom (my sister lol) has a ton of the same symptoms I do.
tl;dr my genes seem sus
I was supposed to go to physical therapy 2 years ago and go to a geneticist 4 months ago to get the blood test but my mom will not make an appointment I have concerns that I have vEDS and I don’t know how to get my mom to realize how serious that could be and how early treatment could help she also doesn’t realize how much pain I am in all the time no matter how I sit or stand I am just in constant pain and when I have subluxations I don’t really know what to do
❤️
Just a heads up - my Physiotherapist (who is EDS aware) is strongly against people using KT tape without knowledge of what they're doing. One, skin sensitivity in EDS- means you're exposing yourself more often than needed to the tape and adhesive which you could develop an allergy to - meaning when you really need it, you may not be able to use it
Two- like all things medical , you're risking more harm that good.
KT has been awesome for me, and it has lessened my subluxations a tonne but just make sure you know what you're doing, is my advice.
Genetics is actually more complex then that. It's a recipe not a blueprint. So while in general your points are valid, in actuality it's not that straight forward. You can inherit the gene, have it be dominate and still not show symptoms. Or the other way around, depending on just how it's actually expressed by the RNA inside each cell. While this is rare, it happens with both eye color and hair color. Like a lot of science, it's either over simplified in high school, or they just didn't know what is known now. This is part of the reason hEDS has been so hard to tie to any specific gene or sets of genes. It may have as much to do with RNA and DNA.
Nope, none of my family have any of this. My aunt does have a little hypermobility, like the hand sign but nothing else. I was always extremely flexible and had popping, crackling joints as a kid, really bad neck pain since elementary school, and ran like a duck, and I did dislocate my collarbone and rib in maybe my teen years. I would have to crack every single joint in my body all day long to get I guess stiffness or pain? relief, but I never really experienced true continuous pain and any regular subluxations and dislocations other than those rare incidents until after I took an antibiotic in March 2019. Ever since then my whole body just crumbled. Any time any part of my body moves it will sublux or dislocate in every joint. I have to wear sleeves and bracing everywhere everyday. I am not really mobile right now. Everything changed for me. Just because you may feel like you have a mild case, your whole world could just change in an instant one day. It literally was night and day. I don’t believe heds is totally inherited. I know my geneticist said environmental factors also could attribute. I know someone personally who also was affected after an antibiotic, as well as tons of literature available regarding the subject and even with vaccine use. I’m not anti-VAX, or anti-medication, but there is something seriously troubling affecting numerous people and I seriously feel like it’s all being labeled as EDS. I do not think it’s based totally on a genetic basis, I believe you can have a genetic predisposition and something of foreign substance or make up does not agree with certain bodies at all. That is why the more commonly known antibiotics like fluoroquinolones now have a black box warning for people with connective tissue disorder. But, there are many that do not have this labeling which are affecting people negatively. More research really must be done. I’m really not surprised more young people nowadays are being affected. Look at the toxic environment we are subjected to, such as the hormones, GMO’s etc. in our foods. This wasn’t how it used to be. We just don’t know what’s the true cause, or what initiates the flare. This should not be happening. I would not wish this upon anyone.