This is very helpful. Could you please consider not using music behind the speech in videos, though? It makes it very difficult for anyone with hearing impairment or sensory processing issues.
I missed the cut for diagnosis at age 39 for HEDS, so I was diagnosed with HSD instead, but based on the diagnostic criteria, I will qualify for HEDS after I turn 50. This makes no sense because HEDS is something you’re born with, not developed over time.
Biologically hEDS is passed on 50/50 per male/female but it's diagnosed at about 15% male to 85% female in the adult population due to hormone effect after puberty (and pregnancy hormones) that cause females to meet criteria easier.
@@darilekron4590 can I clarify, is that to say that in some people the symptoms become more apparent following pregnancy due to the hormonal changes of pregnancy (and I assume breastfeeding)?
@@blueheart990 I was always a bit hypermobile as a kid and an adult but after I had my only child I became way more hypermobile and flexible. Doctors thought I was crazy but I knew my body. I knew that pregnancy and breastfeeding has something to do with it. Thank you for mentioning this because I knew I wasn't crazy.
@@AvenueBCD thank you for your reply. I fell over a lot as a kid (ankles subluxing/ partially dislocating) I remember going grocery shopping with my mum as a kid and repeatedly falling over in one shopping aisle, I remember bursting into tears and asking what was wrong with me and my ankle after several falls was hurting. From memory I fell over at least 11 times…. As I grew this became less and less, to where in my early 20’s I maybe fell over once per year. I had a grass allergy as a kid, as a teenager developed lactose intolerance, then in early - mid 20’s gluten intolerance, then late around 26/27 years old intolerance to brown lentils…. Gut so upset that the only thing that fixed these episodes was to stop eating for 3 days. In my early 20’s I used to walk into things, my friends would laugh at me I was so clumsy (poles, walls - I just didn’t see them or thought I was walking straight when I wasn’t) … I kind of put this down to unknown food intolerances… and migraines… before having my first child I had what I thought was a back injury, lower back pain, nerve pain in legs but mostly feet (sacral nerves), and a muscles spasm in thoracic region…in later stages of pregnancy with my first child, I developed hives (which are much better now but 3 years later I still get), and sub illiac joint pain to the point I could sometimes barely walk., I have my second child now, I rarely fall over now due to ankles subluxing (although I clearly recall it happened once last year when I was breastfeeding still), but I prolapsed when my second child was 4.5months old, (4th person in my immediate family to do so… usually associated to postpartum time). In a 2 week space of time all my muscles in my back went crazy after taking my girls for a walk with the double pram right around when my period came back (so yes I was certain hormones played a role); now she is over one year old and I am bruising very easily and often don’t know why…. And having weird painful muscle spasms… and I’m looking into EDS/HSD and ironically heard of it years ago when I studied nursing and wondered if I had it, but put the idea on the shelf until my health seems to have gone down particularly over the last year getting sick frequently, migraines, bruises and all the stuff I just mentioned… (long post -sorry!! Thank you so much for replying to the last one if you managed to read this far!) my mother has otoslerosis which I though was interesting as it can be related to collagen issues… but really weird gut issues on my dads side all the way back to my grandmother and other interesting things like bakers cysts, lipomas, near sightedness etc, etc
@@blueheart990 It sounds like you have EDS. It's good that you don't fall down as much now. I have always been clumsy and have balance issues due to my stiff but wobbly knees. I saw Dr. Brad Tinkle in 2019 and he validated me and put me on the joint hypermobility spectrum. He has written a few good books on EDS. Very knowledgeable fellow.
I was recently diagnosed with HSD despite having stretchy and soft skin, joints that dislocate daily and severe pain surrounding it, and many more of the points you mentioned; it makes no sense why they ignored those and told me simply because it won’t lessen my life expectancy they won’t help with a diagnosed further even though I am in severe daily pain. I’m so lost on where to go from here and fear it’s only getting worse without any help
As a diagnosed EDS patient for 13 years, life expectancy has nothing to do with a Hypermobile EDS diagnosis or any of the others. The physicians diagnostic criteria is available on EDS Society website and can be printed and brought to a doctor for diagnosis; all of the instructions are on the page. You do have to have a diagnosed mild to moderate mitral valve prolapse to fit the last criteria category, and a family history of the condition was also given more weight. Without it you will be put into the HSD diagnosis. Comorbidities that are rarely discussed are gastrointestinal disorders like gastroparesis, GERD, spastic vomiting, IBD, ulcerative colitis, and Chrons disease. POTS is talked about but general dysautonomia is less discussed but can cause a lot of problems. Besides a mild to moderate prolapse, palpitations, leaking valves, and fluid in the pericardium are also less discussed parts of the condition. EDS can only be treated symptomatically so you need a group of doctors to treat each comorbidity appropriately. Having a good chiropractor and message therapist are essential to good treatment bc subluxation and dislocations need to be addressed bc if not the body will use compensation to balance out the dysfunction...example...if you favor your left knee bc the patella is out there is a good chance you will have pain in your back or in the right leg bc you are favoring the other knee. It becomes a cascade effect. This doctor did not do a good job explaining the two conditions and the reasons they are now separated. Look up the criteria, look it over, and see if you fit the diagnosis. It can take time, but then look for doctors who will treat your symptoms bc having EDS over HSD does not mean that your pain isn't real; it simple means that one group has a different set of criteria than the other. You have to be your own advocate; you can do this. It took me a long time to get my team together, and treatment will go up and down depending on symptoms. It is important to approach certain aspects from a view of long term treatment and not a cure. I hope you can find a better group of physicians who will simply read the criteria and check the boxes...shouldn't be to hard for them. Keep your chin up.
You do need a diagnosis. This happened to my daughter. She diagnosed herself then went to a Dr to get it confirmed he said he was unfamiliar that he would research and give her an answer. At her next appointment he said he “forgot” but it didn’t matter anyway because there was nothing that could be done anyway. She’s not a quitter so she got help from a different Dr. True they can’t fix it but with knowledge they can avoid mistakes (surgery etc) that can cause harm. It’s VERY important to get a diagnosis and an informed medical team to help you. We had to move a thousand plus miles to get that help and it’s been worth every penny it took to get here.
I find that they have a harder time diagnosing adults that have EDS. They have changed the criteria a bit over the years and now have a very strict criteria. They claim it's hard to get a concrete diagnosis for EDS in adulthood. I'm not sure I agree with that.
I think it’s important to recognize that people are born with other conditions that might affect the beighton scale test. Also thay hyper mobility can also include tight or short muscles and ligaments
@@sydzim7751 In many who are hypermobile and dx with hEDS they have tighter hamstrings and such because the body is trying to protect itself, especially the joints from the damage of being over extended.
@@AvenueBCD Same! I experience the very same issues. Either my muscles are way too tight or way too lose and nobody can figure out why (yet). I've basically given up seeking diagnosis anymore. I'm 40 yo and disabled, unable to work, and a burden on my parents. I'm seeking SSI since I don't quality for SSDI.
@@20NewJourney23 I'm sorry to hear it affects you so terribly. I read somewhere in an EDS article that the tightness may be related to the body trying to protect itself from the hyper-flexibility and hyper-mobility, from worse injury.
If I remember correctly (I will see if I still have the criteria sheet), it is being able to hyper-extend your elbows, your thumbs to your wrists, hyper-extension of both knees, being able to bend down and lay your hands flat on the floor without bending your knees (hard for those with hEDS who have tight hamstrings), have had chronic joint pain for at least 3 months prior to seeking diagnosis, and a couple other things. I found the criteria list: www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf
@@centerforcomplexneurology Excellent overview! I was given an unofficial/"likely" EDS diagnosis 30+ years ago by a family doctor who was apparently ahead of the curve in recognizing EDS as a range of symptoms (e.g. soft cartilage, but not loose connective tissues). I'm just now circling back to learn more about it as I see possible symptoms in kids. Good to hear there is an attempt at methodical quantifying and qualifying of these symptoms. I'll be diving into the channel now to learn more. Thanks!
Is there anywhere to get more information on the last bit of "you might have hypermobile EDS but just not have enough points"? Are there other diagnostic criteria available or is a revision being considered? I was just diagnosed with HSD while meeting the symptom-based criteria for EDS (but lacking family diagnosis/have not yet ruled out other connective tissue disorders due to waiting for specialist) so I'm trying to understand the criteria and differences.
Yes, we just did a video explaining the Beighton scale and points including genetics and family history. Please check out our other videos in our playlist under EDS and/or our website under EDS services (videos are also there).
thank you! i have to start looking in getting diagnosed with HSD or hEDS because i’m definitely hypermobile (mostly in hands and arms, i have patellofemoral pain syndrome so my knees aren’t as flexible) but i don’t know anyone else in my family with it
As someone with HSD, thank you for this. This explains this perfectly. I think I get a little frazzled because I feel like we are under represented and not even GP understands it at times. Either way, both conditions suck.😊
Do you have a video explaining what some of the issues associated with EDS my present as? The only thing my doctors have given me as an answer is that there is something wrong with connective tissue in my body so basically, I have a connective tissue disorder. I literally just got out of my rheumatologist appointment and she told me that the geneticist here does not take patients for hyper mobility, but I have all of the other signs of EDS as well as a lot of issues associated EDS. My Doctor knows this too. She even agreed with me but the way that she made it sounds like is they have a lot of people waiting to get in and they’re not taking referrals. She did say that she will refer me if they do take referrals but I’m honestly at a loss here. I’ve been dealing with a lot of these issues lifelong, but they got very severe after I got pregnant. It’s very much disrupted my life. I don’t plan on having any more kids anymore and I’m not even sure, or very confident and advocating for myself anymore. I just wanted to answer I know that there’s nothing I can do to fix us and I’ve also been told that multiple times that this is some thing that is life-changing most likely just because they have tried so many different things, and there are so many different symptoms of so many different issues. But genuinely not knowing is driving me more insane than any of the actual health issues. I did not really take care of myself when I was younger, and I was always taught to push past any pain I ever felt. I was always told that a lot of the problems I had ,I was exaggerating. I desperately wish I had listen to my body and advocated for myself then because I feel like that’s the reason why I’m in the spot today. But my daughter does not deserve to go through this pain because she has the same genetics. At least, if I know, then we can take the precautions that I should’ve taken as a child, teenager, young adult, and even now.
If you have hEDS or other autosomal dominant type of EDS then there's about a 50% chance that each child will receive the gene that you have for EDS... Unless the other parent has a similar EDS also then it would be 75% chance.
A lot of people don’t understand HSD. Cuz if you “google” hypermobility it just states being “double jointed” or “flexible” But I have been diagnosed with hypermobility in 85% of my body and I can’t even begin to explain the type of health problems and pain it has caused me over the years. Basically none of my limbs stiffened and connected the way the should have as I aged. It’s been hell most days.
I'm hypermobile, I have Raynauds, I have extremely myopia, and my hands and feet are large for my stature. I never realized it's all related before. I don't know if it's EDS because I don't have many of the other symptoms, like joints coming out of place. I come from a tall family with knee problems on my mom's side and my dad has really bad vision. It was all just the way we were, or so I thought.
Hi, maybe it's not your case but have you been tested for Marfan syndrome? :) It's another one that causes hypermobility but people who have it tend to be taller than others and also have other symptoms. I'm telling you because I need to see a geneticist too because I'm hypermobile and also have prolapse of mitralic valve.
Aussie here! I got diagnosed by a rheumatologist this year. Over 14 years I went to GPs but was dismissed because "women get anxious easily and that causes chronic pain" and I just need to "increase sleep and exercise". I finally found one who wrote me a referral to see a rheumatologist which was partially covered by Medicare and now I see a physiotherapist at his clinic as well as having prescription medication for pain management.
my doctor said i have EDS but it’s so mild that she didn’t wanna label it for insurance labels so idk why she didn’t just label it as HSD? like it doesn’t make sense 😭
Sorry that happened to you. Unfortunately, without seeing you or your records, we wouldn't know why the physician made that decision. We offer second opions should you be seeking one. If so, please reach out on our website using Klara.
I just got diagnosed with EDS and my body can’t absorb certain vitamins. It just builds on top of my bones and I can stretch like everyone and my organs turn into rubber overtime which I’ve never heard any ones say on any of these videos anything about that?
It can be progressive. I knew a woman in my EDS group who had become more hyper-mobile over time to where her hips constantly dislocated and she had to start using a wheelchair. Not all people experience that. Mine got much more worse after being pregnant.
Dr. Saperstein has a lot of videos in our EDS playlist here on RUclips that explain exactly this. Please reach out to us on our website using Klara should you want to inquire about scheduling.
Is there any benefit to having an actual diagnosis of HSD or EDS? I have been having health issues for years & haven't been able to resolve any of them. I saw a new PCP at the beginning of this year & they said they suspect I have a CT disorder but it is extremely hard to diagnose. Would having the official diagnosis make any difference?
hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think
For reference, I had to get my gallbladder removed because it was malformed and it was stretchy and it was holding a whole bunch of bone fat filled to the brim
I have a question and I've been asking it and asking it and no one has answered me yet. 5 years ago I did the Beighton scale and showed hypermobility in everything except my elbows. Since then I have developed stage 4 basilar thumb arthritis and cannot touch my thumb to my wrist anymore. I have had 10 hernias, my stomach has gone up into my chest four times through hiatal hernias. I used to bring my foot up and put it in my rib cage and ask people can you do this? I grow bone spurs in many places; lumbar facets which caused me to develop Fibromyalgia, cervical bone Spurs which caused Vertebral Artery Compression Syndrome aka Bowhunters Syndrome, I used to lay on my stomach and touch my nose with my toes and at 65 +I could bite my toenails if I wanted to 😆😂 So, would I pass an ehlers-danlos test???
Also I have osteoarthritis in my spine in my hands and my feet and I just got a new shoulder because my rotator cuff horse so badly that they couldn't fix it, yet I could still raise my arm above my head. I told him I was hypermobile. 3 months after my surgery for my reverse total shoulder replacement I already have full range of motion to the front and to the side. My surgeon says he has never had a patient get full range of motion that quickly. I said well, I'm hypermobile. And, my grandfather was a gymnast. Is all of this good enough for a diagnosis?
This is very helpful. Could you please consider not using music behind the speech in videos, though? It makes it very difficult for anyone with hearing impairment or sensory processing issues.
We have made that adjustment and will not be using background music any longer for those reasons. Thanks for the feedback.
@@centerforcomplexneurology Thanks so much!
@@centerforcomplexneurologythx 🙂
@@centerforcomplexneurology thank you!
I had to replay the video as I didnt even notice the music in the background. Very quiet. You very good hearing.
I missed the cut for diagnosis at age 39 for HEDS, so I was diagnosed with HSD instead, but based on the diagnostic criteria, I will qualify for HEDS after I turn 50. This makes no sense because HEDS is something you’re born with, not developed over time.
Biologically hEDS is passed on 50/50 per male/female but it's diagnosed at about 15% male to 85% female in the adult population due to hormone effect after puberty (and pregnancy hormones) that cause females to meet criteria easier.
@@darilekron4590 can I clarify, is that to say that in some people the symptoms become more apparent following pregnancy due to the hormonal changes of pregnancy (and I assume breastfeeding)?
@@blueheart990 I was always a bit hypermobile as a kid and an adult but after I had my only child I became way more hypermobile and flexible. Doctors thought I was crazy but I knew my body. I knew that pregnancy and breastfeeding has something to do with it. Thank you for mentioning this because I knew I wasn't crazy.
@@AvenueBCD thank you for your reply. I fell over a lot as a kid (ankles subluxing/ partially dislocating) I remember going grocery shopping with my mum as a kid and repeatedly falling over in one shopping aisle, I remember bursting into tears and asking what was wrong with me and my ankle after several falls was hurting. From memory I fell over at least 11 times…. As I grew this became less and less, to where in my early 20’s I maybe fell over once per year. I had a grass allergy as a kid, as a teenager developed lactose intolerance, then in early - mid 20’s gluten intolerance, then late around 26/27 years old intolerance to brown lentils…. Gut so upset that the only thing that fixed these episodes was to stop eating for 3 days. In my early 20’s I used to walk into things, my friends would laugh at me I was so clumsy (poles, walls - I just didn’t see them or thought I was walking straight when I wasn’t) … I kind of put this down to unknown food intolerances… and migraines… before having my first child I had what I thought was a back injury, lower back pain, nerve pain in legs but mostly feet (sacral nerves), and a muscles spasm in thoracic region…in later stages of pregnancy with my first child, I developed hives (which are much better now but 3 years later I still get), and sub illiac joint pain to the point I could sometimes barely walk., I have my second child now, I rarely fall over now due to ankles subluxing (although I clearly recall it happened once last year when I was breastfeeding still), but I prolapsed when my second child was 4.5months old, (4th person in my immediate family to do so… usually associated to postpartum time). In a 2 week space of time all my muscles in my back went crazy after taking my girls for a walk with the double pram right around when my period came back (so yes I was certain hormones played a role); now she is over one year old and I am bruising very easily and often don’t know why…. And having weird painful muscle spasms… and I’m looking into EDS/HSD and ironically heard of it years ago when I studied nursing and wondered if I had it, but put the idea on the shelf until my health seems to have gone down particularly over the last year getting sick frequently, migraines, bruises and all the stuff I just mentioned… (long post -sorry!! Thank you so much for replying to the last one if you managed to read this far!) my mother has otoslerosis which I though was interesting as it can be related to collagen issues… but really weird gut issues on my dads side all the way back to my grandmother and other interesting things like bakers cysts, lipomas, near sightedness etc, etc
@@blueheart990 It sounds like you have EDS. It's good that you don't fall down as much now. I have always been clumsy and have balance issues due to my stiff but wobbly knees. I saw Dr. Brad Tinkle in 2019 and he validated me and put me on the joint hypermobility spectrum. He has written a few good books on EDS. Very knowledgeable fellow.
I was recently diagnosed with HSD despite having stretchy and soft skin, joints that dislocate daily and severe pain surrounding it, and many more of the points you mentioned; it makes no sense why they ignored those and told me simply because it won’t lessen my life expectancy they won’t help with a diagnosed further even though I am in severe daily pain. I’m so lost on where to go from here and fear it’s only getting worse without any help
As a diagnosed EDS patient for 13 years, life expectancy has nothing to do with a Hypermobile EDS diagnosis or any of the others. The physicians diagnostic criteria is available on EDS Society website and can be printed and brought to a doctor for diagnosis; all of the instructions are on the page. You do have to have a diagnosed mild to moderate mitral valve prolapse to fit the last criteria category, and a family history of the condition was also given more weight. Without it you will be put into the HSD diagnosis. Comorbidities that are rarely discussed are gastrointestinal disorders like gastroparesis, GERD, spastic vomiting, IBD, ulcerative colitis, and Chrons disease. POTS is talked about but general dysautonomia is less discussed but can cause a lot of problems. Besides a mild to moderate prolapse, palpitations, leaking valves, and fluid in the pericardium are also less discussed parts of the condition. EDS can only be treated symptomatically so you need a group of doctors to treat each comorbidity appropriately. Having a good chiropractor and message therapist are essential to good treatment bc subluxation and dislocations need to be addressed bc if not the body will use compensation to balance out the dysfunction...example...if you favor your left knee bc the patella is out there is a good chance you will have pain in your back or in the right leg bc you are favoring the other knee. It becomes a cascade effect. This doctor did not do a good job explaining the two conditions and the reasons they are now separated. Look up the criteria, look it over, and see if you fit the diagnosis. It can take time, but then look for doctors who will treat your symptoms bc having EDS over HSD does not mean that your pain isn't real; it simple means that one group has a different set of criteria than the other. You have to be your own advocate; you can do this. It took me a long time to get my team together, and treatment will go up and down depending on symptoms. It is important to approach certain aspects from a view of long term treatment and not a cure. I hope you can find a better group of physicians who will simply read the criteria and check the boxes...shouldn't be to hard for them. Keep your chin up.
Sorry to hear you're going through that. Please reach out via our website using Klara if you'd like to inquire about an appointment.
You do need a diagnosis. This happened to my daughter. She diagnosed herself then went to a Dr to get it confirmed he said he was unfamiliar that he would research and give her an answer. At her next appointment he said he “forgot” but it didn’t matter anyway because there was nothing that could be done anyway. She’s not a quitter so she got help from a different Dr. True they can’t fix it but with knowledge they can avoid mistakes (surgery etc) that can cause harm. It’s VERY important to get a diagnosis and an informed medical team to help you. We had to move a thousand plus miles to get that help and it’s been worth every penny it took to get here.
I find that they have a harder time diagnosing adults that have EDS. They have changed the criteria a bit over the years and now have a very strict criteria. They claim it's hard to get a concrete diagnosis for EDS in adulthood. I'm not sure I agree with that.
❤❤❤ this channel! Aa a hEDS patient, all this info gives me so much more power! I'm sharing it with my hEDS and HSD friends!
I think it’s important to recognize that people are born with other conditions that might affect the beighton scale test. Also thay hyper mobility can also include tight or short muscles and ligaments
Wdym tight or short muscles and ligaments ?
@@sydzim7751 In many who are hypermobile and dx with hEDS they have tighter hamstrings and such because the body is trying to protect itself, especially the joints from the damage of being over extended.
@TheSofres, that's me. Hypermobile and bendy but tight muscle groups in my legs and back. It's hard for some doctors to wrap their brains around that.
@@AvenueBCD Same! I experience the very same issues. Either my muscles are way too tight or way too lose and nobody can figure out why (yet). I've basically given up seeking diagnosis anymore. I'm 40 yo and disabled, unable to work, and a burden on my parents. I'm seeking SSI since I don't quality for SSDI.
@@20NewJourney23 I'm sorry to hear it affects you so terribly. I read somewhere in an EDS article that the tightness may be related to the body trying to protect itself from the hyper-flexibility and hyper-mobility, from worse injury.
What are the 12 points for the diagnosis?
If I remember correctly (I will see if I still have the criteria sheet), it is being able to hyper-extend your elbows, your thumbs to your wrists, hyper-extension of both knees, being able to bend down and lay your hands flat on the floor without bending your knees (hard for those with hEDS who have tight hamstrings), have had chronic joint pain for at least 3 months prior to seeking diagnosis, and a couple other things. I found the criteria list: www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf
Nicely explained doc
Thanks!
@@centerforcomplexneurology Excellent overview!
I was given an unofficial/"likely" EDS diagnosis 30+ years ago by a family doctor who was apparently ahead of the curve in recognizing EDS as a range of symptoms (e.g. soft cartilage, but not loose connective tissues).
I'm just now circling back to learn more about it as I see possible symptoms in kids. Good to hear there is an attempt at methodical quantifying and qualifying of these symptoms. I'll be diving into the channel now to learn more. Thanks!
@@chrishayes8197 Thanks! Let us know if you have any questions along the way.
Is there anywhere to get more information on the last bit of "you might have hypermobile EDS but just not have enough points"? Are there other diagnostic criteria available or is a revision being considered?
I was just diagnosed with HSD while meeting the symptom-based criteria for EDS (but lacking family diagnosis/have not yet ruled out other connective tissue disorders due to waiting for specialist) so I'm trying to understand the criteria and differences.
Yes, we just did a video explaining the Beighton scale and points including genetics and family history. Please check out our other videos in our playlist under EDS and/or our website under EDS services (videos are also there).
www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf
thank you! i have to start looking in getting diagnosed with HSD or hEDS because i’m definitely hypermobile (mostly in hands and arms, i have patellofemoral pain syndrome so my knees aren’t as flexible) but i don’t know anyone else in my family with it
As someone with HSD, thank you for this. This explains this perfectly. I think I get a little frazzled because I feel like we are under represented and not even GP understands it at times. Either way, both conditions suck.😊
You're welcome. We hope it helps some patients better understand their conditions and also helps raise awareness.
Do you have a video explaining what some of the issues associated with EDS my present as?
The only thing my doctors have given me as an answer is that there is something wrong with connective tissue in my body so basically, I have a connective tissue disorder.
I literally just got out of my rheumatologist appointment and she told me that the geneticist here does not take patients for hyper mobility, but I have all of the other signs of EDS as well as a lot of issues associated EDS.
My Doctor knows this too. She even agreed with me but the way that she made it sounds like is they have a lot of people waiting to get in and they’re not taking referrals.
She did say that she will refer me if they do take referrals but I’m honestly at a loss here. I’ve been dealing with a lot of these issues lifelong, but they got very severe after I got pregnant. It’s very much disrupted my life. I don’t plan on having any more kids anymore and I’m not even sure, or very confident and advocating for myself anymore.
I just wanted to answer I know that there’s nothing I can do to fix us and I’ve also been told that multiple times that this is some thing that is life-changing most likely just because they have tried so many different things, and there are so many different symptoms of so many different issues.
But genuinely not knowing is driving me more insane than any of the actual health issues. I did not really take care of myself when I was younger, and I was always taught to push past any pain I ever felt. I was always told that a lot of the problems I had ,I was exaggerating.
I desperately wish I had listen to my body and advocated for myself then because I feel like that’s the reason why I’m in the spot today. But my daughter does not deserve to go through this pain because she has the same genetics.
At least, if I know, then we can take the precautions that I should’ve taken as a child, teenager, young adult, and even now.
Yes, we do. We have a few. They are listed under EDS in our RUclips playlist and on our website under EDS services.
If you have hEDS or other autosomal dominant type of EDS then there's about a 50% chance that each child will receive the gene that you have for EDS... Unless the other parent has a similar EDS also then it would be 75% chance.
A lot of people don’t understand HSD. Cuz if you “google” hypermobility it just states being “double jointed” or “flexible”
But I have been diagnosed with hypermobility in 85% of my body and I can’t even begin to explain the type of health problems and pain it has caused me over the years.
Basically none of my limbs stiffened and connected the way the should have as I aged. It’s been hell most days.
I'm hypermobile, I have Raynauds, I have extremely myopia, and my hands and feet are large for my stature. I never realized it's all related before. I don't know if it's EDS because I don't have many of the other symptoms, like joints coming out of place. I come from a tall family with knee problems on my mom's side and my dad has really bad vision. It was all just the way we were, or so I thought.
Hi, maybe it's not your case but have you been tested for Marfan syndrome? :) It's another one that causes hypermobility but people who have it tend to be taller than others and also have other symptoms. I'm telling you because I need to see a geneticist too because I'm hypermobile and also have prolapse of mitralic valve.
You might want to consider asking about screening for Marfan Syndrome, in addition to EDS.
Which is the best type of doctor to see about getting a diagnosis. I'm in Australia.
Aussie here! I got diagnosed by a rheumatologist this year. Over 14 years I went to GPs but was dismissed because "women get anxious easily and that causes chronic pain" and I just need to "increase sleep and exercise". I finally found one who wrote me a referral to see a rheumatologist which was partially covered by Medicare and now I see a physiotherapist at his clinic as well as having prescription medication for pain management.
@@ssnwlove thank you so much for the info. I hope things keep improving for you :)
my doctor said i have EDS but it’s so mild that she didn’t wanna label it for insurance labels so idk why she didn’t just label it as HSD? like it doesn’t make sense 😭
Sorry that happened to you. Unfortunately, without seeing you or your records, we wouldn't know why the physician made that decision. We offer second opions should you be seeking one. If so, please reach out on our website using Klara.
I just got diagnosed with EDS and my body can’t absorb certain vitamins. It just builds on top of my bones and I can stretch like everyone and my organs turn into rubber overtime which I’ve never heard any ones say on any of these videos anything about that?
is hsd or heds progressive? will these only get worse over time despite physical therapy?
It can be progressive. I knew a woman in my EDS group who had become more hyper-mobile over time to where her hips constantly dislocated and she had to start using a wheelchair. Not all people experience that. Mine got much more worse after being pregnant.
Pretty sure I have eds how is it treated
Dr. Saperstein has a lot of videos in our EDS playlist here on RUclips that explain exactly this. Please reach out to us on our website using Klara should you want to inquire about scheduling.
What about diagnosis of EDS thru biopsy ? This how it was confirmed that my collagene is defectuous.
Is there any benefit to having an actual diagnosis of HSD or EDS? I have been having health issues for years & haven't been able to resolve any of them. I saw a new PCP at the beginning of this year & they said they suspect I have a CT disorder but it is extremely hard to diagnose. Would having the official diagnosis make any difference?
hello everyone i have Hypermobility Ehlers-Danlos syndrome and i’m polling other people with eds on whether they think we should change The NPRS to 1-15 for patient of eds please tell me what you think
For reference, I had to get my gallbladder removed because it was malformed and it was stretchy and it was holding a whole bunch of bone fat filled to the brim
I have a question and I've been asking it and asking it and no one has answered me yet. 5 years ago I did the Beighton scale and showed hypermobility in everything except my elbows. Since then I have developed stage 4 basilar thumb arthritis and cannot touch my thumb to my wrist anymore. I have had 10 hernias, my stomach has gone up into my chest four times through hiatal hernias. I used to bring my foot up and put it in my rib cage and ask people can you do this? I grow bone spurs in many places; lumbar facets which caused me to develop Fibromyalgia, cervical bone Spurs which caused Vertebral Artery Compression Syndrome aka Bowhunters Syndrome, I used to lay on my stomach and touch my nose with my toes and at 65 +I could bite my toenails if I wanted to 😆😂 So, would I pass an ehlers-danlos test???
Also I have osteoarthritis in my spine in my hands and my feet and I just got a new shoulder because my rotator cuff horse so badly that they couldn't fix it, yet I could still raise my arm above my head. I told him I was hypermobile. 3 months after my surgery for my reverse total shoulder replacement I already have full range of motion to the front and to the side. My surgeon says he has never had a patient get full range of motion that quickly. I said well, I'm hypermobile. And, my grandfather was a gymnast. Is all of this good enough for a diagnosis?
sure sounds like it!
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Pens in joints for children 12 yrs old
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