@lonelynannainflorida I dont know if tethering can cause similar symptoms that might mimic eds, but eds is genetic. It's something that's written into your dna not something you can develop.
Thank you I was diagnosed at age 10 with EDS in 1992. I finally got my finger splints in 1999. I experienced all sorts of mobility and flexibility issues in my teens. Now in my 20's I am experiencing bleeds. No one knows anything about EDS. Maintenance and management seem to be all over the place. A note to anyone with EDS. Getting a type diagnosis of the vascular type can make you ineligible for certain types of insurance late in life. Monitor AS IF. Avoid type diagnosis of vascular disorder.
i was at a new doctor today be cause of my bad joints/pain (passed off of being loose) but FINALLY this doctor...i was barley in a room with him for 3 minutes when he said that i probably have EDS. it might be some type of arthritis, but have to get blood tests to be sure. Its between EDS and the Arthritis because im not super hypermobile, but have many of the other symptoms. this all started with my ankle in second grade, im in 10th now. Parents please listen to us when we say somethings wrong!
I thought I was normal, blaming pain on other things for 25 years. For the past year my body has been crashing. Temporary pains has become chronic, and I found out my joints are not normal. Currently fighting for a proper diagnose. I'm having a HMS diagnose now but I and many others believe it may be EDS. Too many signs of EDS for it to be "just" HMS.
Thank you all for the kind comments about the video! I am so happy it has helped some of you! I saw a genetic doctor, Dr. Francomano, who gave me my diagnosis. She is located in Maryland at GBMC. I also have an amazing neurosurgeon, Dr. Henderson, who does my surgeries. He is located in Bethesda, MD and is AMAZING!! And yes, I have terrible spasms in my neck and back. I think most of us do. Thank you all and I hope you all are able to receive some relief.
Kristin, Thanks so much for your very inspiring video. Just wondering what type of specialty doctors made diagnoses for you and your son. What state are you located in and what suggested names of specific doctors or a hospitals that understands all of your symptoms? My family has been battling many of the same issues, but have not been able to get clear answers. We are in Chicago , but would travel. Have you ever had muscle spams in your neck or back? THX!
I have EDS hypermobility and was also only diagnosed last year. I was diagnosed with something else when I was 5. So they treated e for something I didn't have and missed a whole lotta warning signs that things were really bad and now I'm suffering for it! Sheesh! Thanks so much for posting this.
I have been waiting to see an EDS video like this for a long time. It has truly made me see a different aspect of having this disease. So often I am depressed about it. But now I don't see why I was. Thank you Kristin.
Kristen, I also have EDS Hypermobility. Thank you so very much for this video. It is THE best I have ever seen. This video is invaluable to me. I will try and share with any person that just did not seem to understand what I am going through. Bless you and your family.
After reading information about EDS, I have a strange doubt: shoud we deduce that beeing flexible is in fact a disease? That what used during times in the circus and was considered as hability is actually just a symptom of EDS or another connective tissue disorder?
This is a great video. I wish there were more people to be advocates for EDS. I personally have type VI. My life has been a constant struggle. For the first part of my life it was because of severe scoliosis. It wasn't until later in life when I started to have artery ruptures that I realized just how serious this condition is. By becoming better educated, it will help provide a better quality of life for those struggling with this condition.
I am sorry to hear your family also has EDS, but before you subscribe to too much surgery check out my video because they are doing something to me called prolotherapy that fixes the popping joints and lax ligaments by injections instead of invasive surgery.
I am 54 and have suffered all of my life but it has truly allowed me to keep working and to be the breadwinner in my family when my back got to the point yours did.
Check out my channel and ask any questions you would like!
I have EDS too. Got diagnosed at 32. I use wheelchairs (power and manual) and an adapted van to get around. I have also had lots of health problems all my life, and was "injury prone". Having good wheelchairs have really made a huge difference, no more braces and also lets me do daily chores as arrends, shopping and such, which is such a relief to be possible to do, but my energy level is very low and I "crash" from doing small things now.
Really good video. I have just been diagnosed with EDS3 aged 50, having struggled with all kinds of health problems all my life. My feet, ankles and knees are in a bad way now as I should have been wearing orthotics. Like you, I am passionate about raising awareness of EDS so that children and young people affected by it can do something to prevent irreparable damage. Bless you and hope you are having a good day.
Gr8 vid. I was diagnosed at 31 years old. I'm now 32. I can relate to a lot of what's mentioned in this vid. I have to rely on a crutch when out & about. I have been disabled by EDS3 :( Shoulder dislocations alone are total hell. I have sooooooo many other problems related to EDS. Thanks for the video :) It REALLY helps raise awareness. I will share video with others, other EDS sufferers I know etc.....
This video is wonderful in that it raises awareness of this little-understood condition which affects far more people than have actually been diagnosed as suffering from it. What a brave and very articulate lady!
Brilliant awareness and info. Like kristen i too had signs of eds my whole life butnwasnt diagnosed till imwas 27. Im now 30 and a fullmtime wheelchair user. I have severe bowel and stomach problems and also suspected POTS. I am very disabled ow and in constant pain with arthritis and nerve damage. If i was diagnosed earlier i could have prevented the damage. Thanks for tjis. I will share it with others.
Could the "spinal tethering" be a CAUSE, RATHER THAN AN EFFECT of the EDS?
lonelynannainflorida 1 month ago
@lonelynannainflorida I dont know if tethering can cause similar symptoms that might mimic eds, but eds is genetic. It's something that's written into your dna not something you can develop.
natalieclad 4 weeks ago
Thank you I was diagnosed at age 10 with EDS in 1992. I finally got my finger splints in 1999. I experienced all sorts of mobility and flexibility issues in my teens. Now in my 20's I am experiencing bleeds. No one knows anything about EDS. Maintenance and management seem to be all over the place. A note to anyone with EDS. Getting a type diagnosis of the vascular type can make you ineligible for certain types of insurance late in life. Monitor AS IF. Avoid type diagnosis of vascular disorder.
sinsofthesea 1 month ago
i was at a new doctor today be cause of my bad joints/pain (passed off of being loose) but FINALLY this doctor...i was barley in a room with him for 3 minutes when he said that i probably have EDS. it might be some type of arthritis, but have to get blood tests to be sure. Its between EDS and the Arthritis because im not super hypermobile, but have many of the other symptoms. this all started with my ankle in second grade, im in 10th now. Parents please listen to us when we say somethings wrong!
mylittlefishy369 1 month ago
I thought I was normal, blaming pain on other things for 25 years. For the past year my body has been crashing. Temporary pains has become chronic, and I found out my joints are not normal. Currently fighting for a proper diagnose. I'm having a HMS diagnose now but I and many others believe it may be EDS. Too many signs of EDS for it to be "just" HMS.
FengRuiXuee 3 months ago
Thank you all for the kind comments about the video! I am so happy it has helped some of you! I saw a genetic doctor, Dr. Francomano, who gave me my diagnosis. She is located in Maryland at GBMC. I also have an amazing neurosurgeon, Dr. Henderson, who does my surgeries. He is located in Bethesda, MD and is AMAZING!! And yes, I have terrible spasms in my neck and back. I think most of us do. Thank you all and I hope you all are able to receive some relief.
kristinmeans 4 months ago
Kristin, Thanks so much for your very inspiring video. Just wondering what type of specialty doctors made diagnoses for you and your son. What state are you located in and what suggested names of specific doctors or a hospitals that understands all of your symptoms? My family has been battling many of the same issues, but have not been able to get clear answers. We are in Chicago , but would travel. Have you ever had muscle spams in your neck or back? THX!
dhsmom3 4 months ago
thank you Kristin for this brilliant explanation of EDS
from a fellow EDS sufferer
alison20092010 4 months ago
I have EDS hypermobility and was also only diagnosed last year. I was diagnosed with something else when I was 5. So they treated e for something I didn't have and missed a whole lotta warning signs that things were really bad and now I'm suffering for it! Sheesh! Thanks so much for posting this.
Claytonfingers 4 months ago
I have been waiting to see an EDS video like this for a long time. It has truly made me see a different aspect of having this disease. So often I am depressed about it. But now I don't see why I was. Thank you Kristin.
itsserinn 4 months ago
Kristen, I also have EDS Hypermobility. Thank you so very much for this video. It is THE best I have ever seen. This video is invaluable to me. I will try and share with any person that just did not seem to understand what I am going through. Bless you and your family.
thecastellariclan 4 months ago
what an amazing positive attitude you have....my hopes and wishes are with you ♥
cvbolan 4 months ago
Great video. Thank you!
After reading information about EDS, I have a strange doubt: shoud we deduce that beeing flexible is in fact a disease? That what used during times in the circus and was considered as hability is actually just a symptom of EDS or another connective tissue disorder?
mimilili99 5 months ago
This is a great video. I wish there were more people to be advocates for EDS. I personally have type VI. My life has been a constant struggle. For the first part of my life it was because of severe scoliosis. It wasn't until later in life when I started to have artery ruptures that I realized just how serious this condition is. By becoming better educated, it will help provide a better quality of life for those struggling with this condition.
parrotise4u2000 5 months ago
I have EDS Type 3 Hypermobility. Thank you for this video. I hope it can help raise awareness on EDS.
officialhugglekitty 6 months ago
thank You for Your Video
I hope pain will go far away of your family.
Fran6jude1 6 months ago
I am sorry to hear your family also has EDS, but before you subscribe to too much surgery check out my video because they are doing something to me called prolotherapy that fixes the popping joints and lax ligaments by injections instead of invasive surgery.
I am 54 and have suffered all of my life but it has truly allowed me to keep working and to be the breadwinner in my family when my back got to the point yours did.
Check out my channel and ask any questions you would like!
Danny
77095066 8 months ago
I have EDS too. Got diagnosed at 32. I use wheelchairs (power and manual) and an adapted van to get around. I have also had lots of health problems all my life, and was "injury prone". Having good wheelchairs have really made a huge difference, no more braces and also lets me do daily chores as arrends, shopping and such, which is such a relief to be possible to do, but my energy level is very low and I "crash" from doing small things now.
LottaTroublemaker 8 months ago
I have EDS too. Thank you so much for this video x
mercuryneedle 8 months ago
Really good video. I have just been diagnosed with EDS3 aged 50, having struggled with all kinds of health problems all my life. My feet, ankles and knees are in a bad way now as I should have been wearing orthotics. Like you, I am passionate about raising awareness of EDS so that children and young people affected by it can do something to prevent irreparable damage. Bless you and hope you are having a good day.
sparrow63474 8 months ago
Gr8 vid. I was diagnosed at 31 years old. I'm now 32. I can relate to a lot of what's mentioned in this vid. I have to rely on a crutch when out & about. I have been disabled by EDS3 :( Shoulder dislocations alone are total hell. I have sooooooo many other problems related to EDS. Thanks for the video :) It REALLY helps raise awareness. I will share video with others, other EDS sufferers I know etc.....
NinjaLynda 9 months ago
This video is wonderful in that it raises awareness of this little-understood condition which affects far more people than have actually been diagnosed as suffering from it. What a brave and very articulate lady!
PSmith549 9 months ago
This has been flagged as spam show
I made an awareness video that can be found on my youtube channel.
misscurlycarrie 9 months ago
Brilliant awareness and info. Like kristen i too had signs of eds my whole life butnwasnt diagnosed till imwas 27. Im now 30 and a fullmtime wheelchair user. I have severe bowel and stomach problems and also suspected POTS. I am very disabled ow and in constant pain with arthritis and nerve damage. If i was diagnosed earlier i could have prevented the damage. Thanks for tjis. I will share it with others.
misscurlycarrie 9 months ago