My sister is thinking that my oldest nephew is showing signs of this type of EDS. Because he’s showing signs of scoliosis. And other things. She sent a picture of the different types of EDS to her Rheumatologist. She has Fibromyalgia , but EDS runs in my dad’s side of the family. Osteogenesis Imperfecta runs on my mom’s side of the family.
Hi Shannon, I personally have kyphosis, scoliosis and lordosis and my subtype of EDS has not been confirmed yet (I have 10 genes for multiple types). I will point out that all subtypes except for hEDS are quite rare, and that scoliosis is quite common in the population! Hopefully he has gotten some answers on his subtype :)
@@chroniccare61 I don’t know if he’s ever went to a doctor to get tested yet. I hope he does because he has a one year old son and they can get the baby tested, too. Holy moly you’ve been put through the wringer!
Thanks for the info. I have this. Recently lost eyesight in one eye. How do women with kyphoscoliosis type EDS fair in pregnancy and childbirth when IVF treatment is used to negate the possibility of an affected embryo/ baby?
Unfortunately there is so little research on pregnancy and EDS, and the studies haven't touched on IVF. All of what I have seen is with patients experiencing pregnancy who have vascular or hypermobile type of EDS. Usually the pregnancy risks are due to the mother's physical makeup like spontaneous miscarriage, hemorrhaging, dislocations of hips, etc. I would think with the kEDS subtype you would be at a higher risk of dislocations and pain in hip and back that comes with the hormonal changes (major increase of progestereone). The only recommendations that I have seen with pregnancy and EDS are to try for planned C sections and use a lot of supportive braces to help reduce the strain on your pelvic floor. Hopefully, you'll be able to get a knowledgeable and supportive doctor through the process! Best of luck!
I am quite positive I have either classical or kyphoscoliotic eds. I’ll have my genetic results in a few days. But I’ve had 4 successful pregnancies & they were awful. I wish someone would’ve diagnosed me beforehand so everyone could’ve been more precautious & proactive. I currently have degenerative osteoarthritis in my pelvis (pubic symphysis area). All of my kids were 9-4 weeks premature. I ended up with preeclampsia, pancreatitis, cholestasis, a POTS dx, incompetent cervix and polyhydramnios so severe they had to do an emergency cesarean. Also my first labor was only an hour long from starting pitocin at a 0, to fully dilated and delivered. They tried to give an epidural, but it was botched because I was pushing the baby out & I leaked a clear fluid from where they tried to start the epidural for about a week. It was soaking through all of the beds and clothes. They kept telling me “oh it’s okay to be peeing yourself. You just gave birth!” when I’d keep begging them to look at my back because there was fluid literally running out of it. By the 4th day they finally looked at my back and had no idea what was going on, but they had to tape gauze over it and change it every hour or two. To this day I still have no idea what was leaking out of my back. But ANYWAYS!! I absolutely recommend having kids! But please please please make sure you know & trust your doctors VERY well before beginning that chapter.
@@emilymarilynn thank you x that sounds like you leaked spinal fluid when they stuck the epidural in, maybe in the wrong area at first, hopefully your body has healed right and made more fluid x
I believe this too. Same with all other EDS types, Marfan and other connective tissue conditions. Reading about folic acid deficiency causing hEDS but don't believe it's the only cause.
@@ashm676 the cause is late stage, aggressive strain of Epstein-Barr virus, grown in a laboratory and injected into humanity over 100 years ago. The neurotoxins that are Released by the virus cause the connective tissue disorder
@@ashm676 For the moment, beside blue sclerae, myopia and hypermetropia I just had partial retinal detachment. My father had retinal detachment as well as ocular infarction (infarctus of an eye) but hopefully we were treated well. What about you, Ash ?
@@francois3116hi, didn't get a notification for this message and only came across it now. I've had 4 retinal detachments previously and lost sight in one eye. Slowly losing sight in last eye. Maybe whole eye transplants will be possible soon. Are you in Ireland?
@@francois3116 I was hoping I'd find someone with kEDS as I was beginning to think I was the only one, I suppose it's lucky I haven't found anyone in my country as it means it's really rare, and we are the only two to find each other globally :) hi from Ireland
Is 400mcg folic acid supplements absorbed by EDS people well?
Thank you for this video
Not a worry :) Thanks for watching!
My sister is thinking that my oldest nephew is showing signs of this type of EDS. Because he’s showing signs of scoliosis. And other things. She sent a picture of the different types of EDS to her Rheumatologist. She has Fibromyalgia , but EDS runs in my dad’s side of the family. Osteogenesis Imperfecta runs on my mom’s side of the family.
Hi Shannon, I personally have kyphosis, scoliosis and lordosis and my subtype of EDS has not been confirmed yet (I have 10 genes for multiple types). I will point out that all subtypes except for hEDS are quite rare, and that scoliosis is quite common in the population! Hopefully he has gotten some answers on his subtype :)
@@chroniccare61 I don’t know if he’s ever went to a doctor to get tested yet. I hope he does because he has a one year old son and they can get the baby tested, too. Holy moly you’ve been put through the wringer!
Thanks for the info. I have this. Recently lost eyesight in one eye. How do women with kyphoscoliosis type EDS fair in pregnancy and childbirth when IVF treatment is used to negate the possibility of an affected embryo/ baby?
Unfortunately there is so little research on pregnancy and EDS, and the studies haven't touched on IVF. All of what I have seen is with patients experiencing pregnancy who have vascular or hypermobile type of EDS. Usually the pregnancy risks are due to the mother's physical makeup like spontaneous miscarriage, hemorrhaging, dislocations of hips, etc. I would think with the kEDS subtype you would be at a higher risk of dislocations and pain in hip and back that comes with the hormonal changes (major increase of progestereone). The only recommendations that I have seen with pregnancy and EDS are to try for planned C sections and use a lot of supportive braces to help reduce the strain on your pelvic floor. Hopefully, you'll be able to get a knowledgeable and supportive doctor through the process! Best of luck!
I am quite positive I have either classical or kyphoscoliotic eds. I’ll have my genetic results in a few days. But I’ve had 4 successful pregnancies & they were awful. I wish someone would’ve diagnosed me beforehand so everyone could’ve been more precautious & proactive. I currently have degenerative osteoarthritis in my pelvis (pubic symphysis area). All of my kids were 9-4 weeks premature. I ended up with preeclampsia, pancreatitis, cholestasis, a POTS dx, incompetent cervix and polyhydramnios so severe they had to do an emergency cesarean. Also my first labor was only an hour long from starting pitocin at a 0, to fully dilated and delivered. They tried to give an epidural, but it was botched because I was pushing the baby out & I leaked a clear fluid from where they tried to start the epidural for about a week. It was soaking through all of the beds and clothes. They kept telling me “oh it’s okay to be peeing yourself. You just gave birth!” when I’d keep begging them to look at my back because there was fluid literally running out of it. By the 4th day they finally looked at my back and had no idea what was going on, but they had to tape gauze over it and change it every hour or two. To this day I still have no idea what was leaking out of my back. But ANYWAYS!! I absolutely recommend having kids! But please please please make sure you know & trust your doctors VERY well before beginning that chapter.
@@emilymarilynn thank you x that sounds like you leaked spinal fluid when they stuck the epidural in, maybe in the wrong area at first, hopefully your body has healed right and made more fluid x
It’s not rare, I know many people that have it, they just arn’t diagnosed
I believe this too. Same with all other EDS types, Marfan and other connective tissue conditions. Reading about folic acid deficiency causing hEDS but don't believe it's the only cause.
@@ashm676 the cause is late stage, aggressive strain of Epstein-Barr virus, grown in a laboratory and injected into humanity over 100 years ago.
The neurotoxins that are Released by the virus cause the connective tissue disorder
Not this type. I know hEDS and EDS are extremely misdiagnosed but not the specific ones like this where both parents need to have it.
I suffer this form and my life is a hell.
Hi, I have this form of EDS too. Do you have eye problems like me?
@@ashm676 For the moment, beside blue sclerae, myopia and hypermetropia I just had partial retinal detachment. My father had retinal detachment as well as ocular infarction (infarctus of an eye) but hopefully we were treated well. What about you, Ash ?
@@francois3116hi, didn't get a notification for this message and only came across it now. I've had 4 retinal detachments previously and lost sight in one eye. Slowly losing sight in last eye. Maybe whole eye transplants will be possible soon. Are you in Ireland?
@@ashm676 Sorry, I'm in France.
@@francois3116 I was hoping I'd find someone with kEDS as I was beginning to think I was the only one, I suppose it's lucky I haven't found anyone in my country as it means it's really rare, and we are the only two to find each other globally :) hi from Ireland