I have kEDS (EDS type 6) as well. I'm 40, found out through a genetic test late last year. Thank you for this video because I'm doing a lot of self research while my doctor team gets me checked with various specialists (I'm close to finding an EDS specialist as well). I too have developed an issue with my swallowing and it is sometimes painful sometimes not, and there's also a knocking/clicking that happens in my throat, but I'm never able to fully clear my unending mucus and other junk that's somewhere stuck in my face. Hearing about the swallowing issue from someone also with kEDS is a lightbulb moment for me because I had pneumonia back in summer of 2021 and thought it was just lasting damage from that, and my worsening spinal curve going further to the right (even my neck spine is pushed to the right). This has been debilitating and I have been sidelined from working my business since 2018. I will be bringing up this short interview video to my doctors. All the best!
I have kEDS, but it affects my joints and eyes mostly. I used to get frequent dislocations and have lost sight in one eye in 2016. There's nobody in my country to share tips etc or no group for advice/ direction or support. More research needs to be done into all EDS types and indeed other connective tissue conditions eg Marfan as there are so many differences with each type, yet so many similarities between all connective tissue conditions.
Hello it's nice to meet you 😊please forgive mistakes as I have to use Accessibility software so I can interface with my tablet and the tablet makes mistakes and it's so challenging to make proper edits Since I have to speak every single command including Gramercy and things like that. Wanted to say more because being a zebra is rough and practically impossible to find competent help. But ofc just as I started to comment my feeding tube is giving me way too much/trouble atm. So I'm sorry for odd reply but hope you can find some comfort in knowing you're not alone which I cringe saying that because it's so cliche, but ik for Me at least having a community was more than being called a liar and a faker by so many others. sending you love hoping you have a blessed day they're there are other zebras out there who support you that hopefully you can connect with and social media Since planning ahead can be hard for us.
@@las5510 Hi, yes I hate when my phone speaks for me and gets it so wrong haha it's just me all these years, I don't like social media, TH-cam and Google are the nearest I'll go to virtual world so I'd say it'll be just me until I die and I think I've made peace with that. It's good to hear of more EDSers out there. Hopefully there'll be more medical progression in my lifetime.
@ashm676 i'm in ireland too though i don't have any sort of diagnosis yet. the care here is really abysmal, for most health conditions tbh but especially for eds.
Wow, I'm so glad your achalasia did not turn out to be gastroesophageal cancer. Whenever a patient has trouble swallowing with or without pain, and weight loss, cancer is a big possibility. Even though you're "too young" to have that cancer, you can get it.
I think I suffer from multiple issues heds. Joint dislocations/ pain. Now I’m having terrible eye problems and no one will even discuss getting a diagnosis for me.
Nice video, I really want to know more about kEDS, too bad he didn't show pictures, the ones I see on google are of very severe scoliosis, I am wondering if you can have kEDS with not such severy scoliosis...
Do you know maybe if there's any connection between dehydration and kEDS (or any other type of EDS)? I'm constantly dehydrated and no one knows why cause my standard blood test are not telling anything xd my blood is too thick, I'm thirsty all the time, my skin and eyes are dry. I'm surrounded by lotions, eyedrops and isotonic water to survive Currently my genetic specialist is convinced about kEDS diagnosis but I need to wait till october for results and in the meantime I'm trying to find what I can on the internet. This disease is a blind spot in my country unfortunately.
Hi, I have kEDS and notice dehydration now and then, my eyes are dry too. I lost eyesight in one in recent years. I'm in Ireland, what country are you from?
@@ashm676 yes, in my case it's gradual. I see grey dot and it's bigger with time, currently I would say it's about 1/5 of the sight. They checked my eyes, said everything is fine and I'm a hypochondriac. Slowly I'm starting to believe that
@@ashm676 in my case it's a grey spot I see in the right corner of my right eye and that spot is getting bigger, currently I would say about 1/5 of my sight. They tested my eyes and said everything is fine and I'm just hypochondriac. Slowly I'm starting to believe that
I was told by a doctor that I probably have EDS but he wouldn't bother giving me a diagnosis. I don't dislocate any joints. My aorta looks fine. My sister says my skin is soft but my boyfriend doesn't think so. Signs I do have EDS: I have ambliopia, I am very nearsighted, epicanthal folds, TMJ, high palate, teeth overlap, POTS, papyrus scars, atropic scarring, hyper mobile joints, slight scoliosis, feet hurt a lot when I stand on them for 10 minutes or more, general muscle aches especially in the morning, IBS, sometimes bad stomach pain after eating, heartburn. A fair number of family members have hiatal hernias and colon cancer. I don't have a hiatal hernia but I did get colon polyps at an early age. Is it worth trying to get an EDS diagnosis? The POTS does impact my life very badly but I don't have extreme problems. I am just worried without the diagnosis something worse might be missed.
I paid for a blood test with a geneticist to find out I have kEDS after losing eyesight in one eye in recent years, maybe there's something available to you in your country?
@@ashm676 They offered me a blood test for US $1000. I am on disability and cannot afford it. Also 80% to 90% of people who have EDS have hypermobile Ehlers Danlos and they don't know which genes are responsible for their illness yet. So there is only a 10% to 20% chance a blood test would help me. If it was cheaper then I would pay for the test but I can't justify spending $1000 for a test that probably won't give me any answers.
I have a touch of scoliosis with kEDS, thinking it's common with connective tissue conditions but it's hot or miss whether it shows through in some people.
I've been diagnosed with EDS by a rheumatologist years ago, but I strongly suspect i have kEDS due to my spine being my biggest issue, and when I read the diagnostic criteria, I believe I fit into many of those too, but I'm not sure how I go about getting a diagnosis of kEDS vs hEDS. Are there any specialists in the UK I could ask to be referred to? The rheumatologist I saw, only saw me once, and said they couldn't see me regularly because there's no funding for ongoing support there, and my GP knows fairly little about it!
I have kEDS (EDS type 6) as well. I'm 40, found out through a genetic test late last year. Thank you for this video because I'm doing a lot of self research while my doctor team gets me checked with various specialists (I'm close to finding an EDS specialist as well). I too have developed an issue with my swallowing and it is sometimes painful sometimes not, and there's also a knocking/clicking that happens in my throat, but I'm never able to fully clear my unending mucus and other junk that's somewhere stuck in my face. Hearing about the swallowing issue from someone also with kEDS is a lightbulb moment for me because I had pneumonia back in summer of 2021 and thought it was just lasting damage from that, and my worsening spinal curve going further to the right (even my neck spine is pushed to the right). This has been debilitating and I have been sidelined from working my business since 2018. I will be bringing up this short interview video to my doctors. All the best!
I have kEDS, but it affects my joints and eyes mostly. I used to get frequent dislocations and have lost sight in one eye in 2016. There's nobody in my country to share tips etc or no group for advice/ direction or support. More research needs to be done into all EDS types and indeed other connective tissue conditions eg Marfan as there are so many differences with each type, yet so many similarities between all connective tissue conditions.
Hello it's nice to meet you 😊please forgive mistakes as I have to use Accessibility software so I can interface with my tablet and the tablet makes mistakes and it's so challenging to make proper edits Since I have to speak every single command including Gramercy and things like that.
Wanted to say more because being a zebra is rough and practically impossible to find competent help. But ofc just as I started to comment my feeding tube is giving me way too much/trouble atm. So I'm sorry for odd reply but hope you can find some comfort in knowing you're not alone which I cringe saying that because it's so cliche, but ik for Me at least having a community was more than being called a liar and a faker by so many others. sending you love hoping you have a blessed day they're there are other zebras out there who support you that hopefully you can connect with and social media Since planning ahead can be hard for us.
@@las5510 Hi, yes I hate when my phone speaks for me and gets it so wrong haha it's just me all these years, I don't like social media, TH-cam and Google are the nearest I'll go to virtual world so I'd say it'll be just me until I die and I think I've made peace with that. It's good to hear of more EDSers out there. Hopefully there'll be more medical progression in my lifetime.
Thank you for sharing your experiences. Which country are you in? We can look to provide support resources and places to connect.
@@TheEhlersDanlosSociety hi, I'm in Ireland
@ashm676 i'm in ireland too though i don't have any sort of diagnosis yet. the care here is really abysmal, for most health conditions tbh but especially for eds.
Wow, I'm so glad your achalasia did not turn out to be gastroesophageal cancer. Whenever a patient has trouble swallowing with or without pain, and weight loss, cancer is a big possibility. Even though you're "too young" to have that cancer, you can get it.
I think I suffer from multiple issues heds. Joint dislocations/ pain. Now I’m having terrible eye problems and no one will even discuss getting a diagnosis for me.
Please do reach out to our helpline for information and support at ehlers-danlos.com/eds-helpline/
I have kEDS with eye issues. Been misdiagnosed. I lost eyesight in one eye. What eye problems are you having?
Nice video, I really want to know more about kEDS, too bad he didn't show pictures, the ones I see on google are of very severe scoliosis, I am wondering if you can have kEDS with not such severy scoliosis...
Hello! Please reach out to our helpline with your questions www.ehlers-danlos.com/eds-helpline/
I have kEDS but very slight scoliosis
Do you know maybe if there's any connection between dehydration and kEDS (or any other type of EDS)? I'm constantly dehydrated and no one knows why cause my standard blood test are not telling anything xd my blood is too thick, I'm thirsty all the time, my skin and eyes are dry. I'm surrounded by lotions, eyedrops and isotonic water to survive
Currently my genetic specialist is convinced about kEDS diagnosis but I need to wait till october for results and in the meantime I'm trying to find what I can on the internet. This disease is a blind spot in my country unfortunately.
Hi, I have kEDS and notice dehydration now and then, my eyes are dry too. I lost eyesight in one in recent years. I'm in Ireland, what country are you from?
@@ashm676 that's interesting, I'm losing sight in one eye too. I'm from Poland
@@iloveminiapplepies mine happened fast, retinal detachment... Yours sounds like it's happening slowly, did your doctor say what it was so far?
@@ashm676 yes, in my case it's gradual. I see grey dot and it's bigger with time, currently I would say it's about 1/5 of the sight. They checked my eyes, said everything is fine and I'm a hypochondriac. Slowly I'm starting to believe that
@@ashm676 in my case it's a grey spot I see in the right corner of my right eye and that spot is getting bigger, currently I would say about 1/5 of my sight. They tested my eyes and said everything is fine and I'm just hypochondriac. Slowly I'm starting to believe that
I was told by a doctor that I probably have EDS but he wouldn't bother giving me a diagnosis.
I don't dislocate any joints. My aorta looks fine. My sister says my skin is soft but my boyfriend doesn't think so. Signs I do have EDS: I have ambliopia, I am very nearsighted, epicanthal folds, TMJ, high palate, teeth overlap, POTS, papyrus scars, atropic scarring, hyper mobile joints, slight scoliosis, feet hurt a lot when I stand on them for 10 minutes or more, general muscle aches especially in the morning, IBS, sometimes bad stomach pain after eating, heartburn.
A fair number of family members have hiatal hernias and colon cancer. I don't have a hiatal hernia but I did get colon polyps at an early age.
Is it worth trying to get an EDS diagnosis? The POTS does impact my life very badly but I don't have extreme problems. I am just worried without the diagnosis something worse might be missed.
please reach out to our helpline for support and resources! www.ehlers-danlos.com/eds-helpline/
@@TheEhlersDanlosSociety Thank you.
I paid for a blood test with a geneticist to find out I have kEDS after losing eyesight in one eye in recent years, maybe there's something available to you in your country?
@@ashm676 They offered me a blood test for US $1000. I am on disability and cannot afford it. Also 80% to 90% of people who have EDS have hypermobile Ehlers Danlos and they don't know which genes are responsible for their illness yet. So there is only a 10% to 20% chance a blood test would help me. If it was cheaper then I would pay for the test but I can't justify spending $1000 for a test that probably won't give me any answers.
My sister has scoliosis in her back and so does my oldest nephew, I wonder if she could have this as well as cEDS? Can you have two as a crossover?
Scoliosis is also seen in cEDS.
I have a touch of scoliosis with kEDS, thinking it's common with connective tissue conditions but it's hot or miss whether it shows through in some people.
I've been diagnosed with EDS by a rheumatologist years ago, but I strongly suspect i have kEDS due to my spine being my biggest issue, and when I read the diagnostic criteria, I believe I fit into many of those too, but I'm not sure how I go about getting a diagnosis of kEDS vs hEDS. Are there any specialists in the UK I could ask to be referred to? The rheumatologist I saw, only saw me once, and said they couldn't see me regularly because there's no funding for ongoing support there, and my GP knows fairly little about it!
Please reach out to our helpline with your questions! www.ehlers-danlos.com/eds-helpline/
I paid for a blood test with a geneticist who diagnosed kEDS
I have kEds ..iam 26 years old . my weight is 46kg..can i gain weight or not......is there any way possible to gain weight
I have kEDS and my weight is always low, BMI is reading underweight constantly. I have been wondering how to do this too.
Please do reach out to our helpline team at ehlers-danlos.com/eds-helpline/
@@TheEhlersDanlosSociety no support in my country, "it's too rare to know anything about "
Question: how would kEDS affect pregnancy and mother? ... Any people with kEDS here....
We have a page on kEDS here that you navigate by body system. Use the dropdown to select "pregnancy" www.ehlers-danlos.com/keds/