Yes I do have KEDS I was diagnosed at 9 years old with EDS then have had so many spinal fusions my whole spine has been fused from t4 to s1 then both my hips have also now are stainless steel. It took 20 additional years (2014) to get genetic testing with blood & and urine. PLOD1 genes are affected. My KEDS has made me a stronger character building and brave woman. Thank you so much for this video. ❤
Yes, thank you.Are welcome.I just don't like my replies to trying to help people seek help for their EDS being deleted. I. Spent 45 minutes on a Reply and you deleted it that shows the integrity that shows show towards the community.I am unsubscribing to your channel and will start my own happy wonderful day
@ldudley501 I'm confused, I haven't deleted any replies/comments. I can still see your comment "yes I do have keds I was diagnosed at 9 years old..." Is that the one? It's still up and visible. If there was a second comment after my reply of thanks for sharing your story, it was not me who deleted it. It's possible TH-cam did, though I would assume you would get some sort of notification that you broke their rules. I haven't had to delete any comments yet, since no one has been wildly inappropriate yet. To my knowledge, I've only had one viewer be rude, and I've left her comments up (they were only rude, not inappropriate or super hurtful or anything). You can check them out on the "is hEDS progessive?" video comments section. I'm sorry your comment got deleted, but I can assure you, it was not me who deleted it. Please repost it, I want everyone access to all the help they can get!
I highly suspect keds, i have congenital scoliosis and kyphosis, hypermobility, joint subluxation, joint pain, easy bruising, astigmatism, chronic migraine, subcutaneous nodules, with connective tissue thickening superficial to the fascia, food sensitivities that come and go, inflammation that comes and goes, potentially some pelvic floor issues (appointment in two weeks) and im sure the list will go on the more i seek out the cause of my issues, i also have a preauricular pit which just points to more congenital issues 😅 How do i ask my doctor to go down the path of keds??!
@annamurphy2277 Hi wow thank you for sharing your story sounds quite similar to me. I do have KEDS it took me 20 years to find out what kind of EDS as I was diagnosed as a 9 year old in 1994 I am now 39. My suggestion for you how to find out if you do have EDS or KEDS is to get a referral from your doctor to see a genetics specialist and ask to be tested for EDS /KEDS. I found out in 2014 through a urine sample it was positive because I was missing the enzymes that proved my plod1 genes are affected aka KEDS.. I truly wish the best for you and your search for answers.. EDS is more common than people do think in the common subtypes, however, KEDS it extremely rare I am glad to be a part of this community because I do not feel alone. And I really hope that if you can have by the means a genetics consultation bring up the issue of Ehlers Danlos syndrome. They can draw blood.They can do a skin biopsy and do a urine sample to see if enzymes are missing and point to the gene that is causing the mutation of the E.D.S that is manifested in you. Do not give up hope.There are many ways to find out.I wish the best for you. Thank you once again for sharing.Your story is remarkably similar to mine.
@annamurphy2277 If you have a good doctor, you can say what you just said and ask for a referral to a geneticist. If they don't want to refer you, you can either try to find someone who will, or look into online options. I've heard good things about a Dr. Atwal that does online evaluations and will order genetic testing. You can also look at the Invitae website and get set up to do an online appointment with one of their genetic counselors.
@ldudley501 I haven't deleted anyone's comments on my channel, please try reposting it! It's possible TH-cam took it down, but I think they send you a notification when they do that explaining why. It might have just been a glitch, too.
Positing this publicly but I'll message you privately the second I'm finished. Your symptoms are almost the EXACT same list as mine! While I'm waiting on test results for confirmation, I am 100% certain that everything I experience is resultant from FKBP14 Related kEDS. When I receive my diagnosis (which should be in the next 8 weeks, IF I am confirmed, I believe I will be only the 24th person to be diagnosed with the FKBP14 version. If anyone else out there suspects they may have this condition please please PLEASE message me, I can provide you with links to studies detailing most known sufferers symptoms as well as information. As of the moment writing this I am 99% certain that I will be the only confirmed case of FKBP14 kEDS in my entire country...
Do you, or anyone you know have kEDS? I want to hear about it!
Hello 🎉it is me😢
@almazka6923 Hello! Sorry you have this, but I'm glad you're here and part of this supportive community!
@@ehlersdanlosandi Thanks you!
Yes I do have KEDS I was diagnosed at 9 years old with EDS then have had so many spinal fusions my whole spine has been fused from t4 to s1 then both my hips have also now are stainless steel. It took 20 additional years (2014) to get genetic testing with blood & and urine. PLOD1 genes are affected. My KEDS has made me a stronger character building and brave woman. Thank you so much for this video. ❤
@ldudley501 You are so welcome, thanks for sharing your story!
Yes, thank you.Are welcome.I just don't like my replies to trying to help people seek help for their EDS being deleted. I.
Spent 45 minutes on a Reply and you deleted it that shows the integrity that shows show towards the community.I am unsubscribing to your channel and will start my own happy wonderful day
@ldudley501 I'm confused, I haven't deleted any replies/comments. I can still see your comment "yes I do have keds I was diagnosed at 9 years old..." Is that the one? It's still up and visible. If there was a second comment after my reply of thanks for sharing your story, it was not me who deleted it. It's possible TH-cam did, though I would assume you would get some sort of notification that you broke their rules. I haven't had to delete any comments yet, since no one has been wildly inappropriate yet. To my knowledge, I've only had one viewer be rude, and I've left her comments up (they were only rude, not inappropriate or super hurtful or anything). You can check them out on the "is hEDS progessive?" video comments section. I'm sorry your comment got deleted, but I can assure you, it was not me who deleted it. Please repost it, I want everyone access to all the help they can get!
I highly suspect keds, i have congenital scoliosis and kyphosis, hypermobility, joint subluxation, joint pain, easy bruising, astigmatism, chronic migraine, subcutaneous nodules, with connective tissue thickening superficial to the fascia, food sensitivities that come and go, inflammation that comes and goes, potentially some pelvic floor issues (appointment in two weeks) and im sure the list will go on the more i seek out the cause of my issues, i also have a preauricular pit which just points to more congenital issues 😅
How do i ask my doctor to go down the path of keds??!
@annamurphy2277 Hi wow thank you for sharing your story sounds quite similar to me. I do have KEDS it took me 20 years to find out what kind of EDS as I was diagnosed as a 9 year old in 1994 I am now 39. My suggestion for you how to find out if you do have EDS or KEDS is to get a referral from your doctor to see a genetics specialist and ask to be tested for EDS /KEDS. I found out in 2014 through a urine sample it was positive because I was missing the enzymes that proved my plod1 genes are affected aka KEDS.. I truly wish the best for you and your search for answers.. EDS is more common than people do think in the common subtypes, however, KEDS it extremely rare I am glad to be a part of this community because I do not feel alone. And I really hope that if you can have by the means a genetics consultation bring up the issue of Ehlers Danlos syndrome. They can draw blood.They can do a skin biopsy and do a urine sample to see if enzymes are missing and point to the gene that is causing the mutation of the E.D.S that is manifested in you. Do not give up hope.There are many ways to find out.I wish the best for you.
Thank you once again for sharing.Your story is remarkably similar to mine.
@annamurphy2277 If you have a good doctor, you can say what you just said and ask for a referral to a geneticist. If they don't want to refer you, you can either try to find someone who will, or look into online options. I've heard good things about a Dr. Atwal that does online evaluations and will order genetic testing. You can also look at the Invitae website and get set up to do an online appointment with one of their genetic counselors.
@@ehlersdanlosandi Sorry, you deleted my comments.I was just trying to help.I spent 45 minutes writing that Reply
@ldudley501 I haven't deleted anyone's comments on my channel, please try reposting it! It's possible TH-cam took it down, but I think they send you a notification when they do that explaining why. It might have just been a glitch, too.
Positing this publicly but I'll message you privately the second I'm finished.
Your symptoms are almost the EXACT same list as mine! While I'm waiting on test results for confirmation, I am 100% certain that everything I experience is resultant from FKBP14 Related kEDS. When I receive my diagnosis (which should be in the next 8 weeks, IF I am confirmed, I believe I will be only the 24th person to be diagnosed with the FKBP14 version. If anyone else out there suspects they may have this condition please please PLEASE message me, I can provide you with links to studies detailing most known sufferers symptoms as well as information. As of the moment writing this I am 99% certain that I will be the only confirmed case of FKBP14 kEDS in my entire country...