I have HEDS and you have a better understanding of EDS than most. I'm often asked how to spell it so they can Google it. Our biggest issue, is that even in the medical community there is little to no awareness. Thank you for being EDS knowledgeable and helping spread awareness.
Hi Tanya, thanks so much for leaving a comment! We know many people are affected by this condition and we will continue to do our best to spread EDS awareness!
Great summary of EDS beyond the hypermobility. Clear, concise, yet gives weight to the diagnosis. It’s nice to have resources like this to show family and friends who aren’t familiar with EDS. Thank you!
Thank you so much for your kind words Jennifer! I'm really glad to hear that you found the video helpful in explaining EDS beyond just hypermobility. It's crucial to raise awareness and understanding, especially among family and friends who might not be familiar with the condition!
i too have hyper mobility EDS I went to the hospital and the nurse didn’t know what it was so i normally explain not many know it doesn’t just affect one part of the body but all over it’s like connect the dots some days can be overwhelming thanks for sharing a great video
Omg... wonderful video! I was diagnosed with fibromyalgia then i went to another doctor and they told me EDS... I have pain everyday. I see a neuro, gastro, orthopedic, urologist, rheumatologist. I have been dealing with this for 20 years and finally feel like I'm ultimately going to get the proper help.
@cindlou7335 my PCP and rheumatologist. I'm also seeing an immunologist tomorrow. I also see a cardiologist didn't mention that on the posting:) hope that helps
Thanks for the great video! Increasing EDS awareness is so important! I work in the medical field (radiology), and even I didn't know what hypermobility was, let alone EDS until I was 29. I believe if more people, health care workers and patients alike, knew what hypermobility and EDS was, that more people would get diagnosed and recieve treatment.
I have Classical EDS, and I am very happy that you’re helping to bring Awareness to this. Unfortunately not many people understand what it is, especially when you have to go to the hospital ( my hometown hospital doesn’t have a clue what it is) as for the Hospital I’m in the Metropolitan City( Capital City of my state) they do know what it is. My Neurologist is the one who dx me. He also treats me for my Epilepsy, Dysautonomia, and Migraines. I have MCAS and I have broke out from CT contrast Solution that’s how we found out about it plus, I have Allergies to many different medications.
Do You mind be asking ,how your neurologist diagnosed you please my rhumatoligist no interest in Ed's only time he thinks a dx in important is if it's vascular ..so dx me why had ,even though only reason not is family history none except my son hypermobile ,DcD and asd ...and feels my skin whilst stretchy not enough ...anyhow have appointment with neurology soon, for numbness and headaches,any ips how do suggest looking to see if Ed's ? I live in Ireland and no geneticist here or clinic or hospital for it ....very few get dx Please and thanks
I am not diagnosed. I am a nurse though and I know I have this rampant in my family. My issues are nausea in morning often, hands burning in pain in mornings (neck shifts). My THUMBS pop out slightly. My wrists pop out. My middle finger is crooked. I have to pop my clavicle back alot. My neck is subluxed (easy to pop). constipation. Bladder issues. Heart rate racing often especially after squatting. My knees get loose but don't pop out (my sisters does). My hips get out of joint/snap. My flat feet HURT and roll too much. Oh but I loved doing splits, putting my legs behind my head, and of course the thumb trick. My 9 year old shows up with legs that turn 180 in the socket? 😮
Yes, these are all typical presentations for EDS. Some are more severe than others but we always recommend finding a specialist who is well versed in this condition to provide a more specific plan of care
AuDHDer (commonly associated) and my great aunty couldn't yawn too far without locking/dislocating her jaw. Can do the thumb thing. Currently got back of the knee pain. It's cold and I've been running around after my daughter. But I don't know if I exactly fit any of the types..
Excellent video! I wish you were in my area here in Florida. Are you aware if EDS can get worse for women in menopause years? I feel that it was a real issue for me in puberty and now it’s more of an issue again at 51 years old.
This is a great question! From our experience, we do see flare ups occur during puberty and menopause but then dissipate afterwards. Since each person is different, the severity will vary from person to person. Hope that helps!
I went to the doctor to get evaluated for ESD But I was not given an evaluation, I was given access to free Physical Therapy that I have right to now but I wonder how I can get a proper evaluation
Thank you Dr “you sound more knowledgeable than most drs here in Jax Fl , l been struggling with this for years, l didn’t know that eds was a connective tissue disorder, l have these nodules under my skin everywhere,since l was a child l have had most of the symptoms, pain and every thing else has too , l have been trying to tell doctors for years but they thought l was either a dope addict or a psychopath , when l would get these terrible flares either from a uti or gastrointestinal disorder or something, emergency room personal would interrogate me especially sense l have gotten older l am 76 in June still trying to get something done. it’s nice to see people taking notice eds and connective tissue God Bless You Son ! 🙏🌸🙏🇺🇸🙏🌸
Thank you for sharing your story. It's unfortunate that you haven't received the understanding and care you deserve over the years. I hope to continue to spread awareness to help people like you. God bless you too, and I wish you all the best in your continued journey towards better health!
My mother was diagnosed with fibromyalgia but we now think she had EDS. She had high blood pressure and died aged 64 from heart failure. She had multiple pain points every day. Since it's genetic and I have similar issues (hypermobility, numbness, bad circulation, back pain, loose joints, etc.), how can I get tested?
Thanks for your response! There are various ways to check for hypermobility but given that you suspect that it's genetic, typically genetic testing is recommend. Keep in mind that hypermobility/EDS cases are not always positive on standard genetic testing which requires further assessment of not only hypermobility testing, but symptoms and other related presentations.
My daughter was diagnosed with HEDS and my son(deceased) and i were diagnosed by proxy. I was on prednisone for 40 plus years but my new PCP finally got me off. Since going off my pain has ramped up 50% or more, now in my hands, neck, hips, back ect . Is there a good place to find braces like compression for the hands? Thank you for great video
Thank you for the comment! You can get off the shelf braces and splints at most pharmacies but if you are wanting a more custom brace, you will need to see a orthotist (your MD can recommend for you too)
Thanks for reaching out! Here are a couple of resources for you to look into regarding EDS doctors and support groups: www.shayahealth.com/ehlers-danlos-syndrome.php I wish you all the best moving forward!
How do you know you can trust a PT? In NZ my daughter was given neck exercises that caused her to miss her final year at school and become bed-bound and permanent damage. It's like they don't even know how to read the imagery that can be done. It feels like PT says it can be treated with no accountability for the damage they do when they don't have the right training. EDS is complicated.
EDS is very complicated, which is why we have dedicated the last 15 years researching and making sure those with this condition receive the best treatment possible. We are sorry to hear about your experience with other clinicians.
This can be 1 of 2 things. #1: Could be a rebound effect (meaning that the body is making changes in posture, neurological functioning, etc, which is a good thing but the body has a tendency to hyper react before it gets better moving into the following treatment. #2 The selection of treatment interventions may have not been appropriate for what you are dealing with. This would just required a discussion with your provider to modify a few things so that they can better help.
There are many facilities nationwide that offer services for those with EDS. I would suggest researching more and seeing if they also provide individualized services for EDS-hypermobility syndromes
Ive been searching for help the doctors think they know how i should feel and never want to actually listen. Ive had progressive issues since I was a kid i have surgery an all kinds of treatments that don't help not sure if anyone else feels lonely and unheard from the people around them like i do 🥺☹️😞🙁
Thank you for sharing! I'm sorry to hear that you're feeling this way. It's incredibly disheartening when doctors don't take the time to truly listen and understand your experiences. Feeling lonely and unheard in your health journey can be isolating and frustrating. You're not alone in this struggle, and your feelings are completely valid. It's important to keep advocating for yourself and seeking out healthcare professionals who will listen to your concerns and work with you to find solutions. Additionally, connecting with others who may be going through similar experiences can provide valuable support and understanding. Don't give up hope, and know that there are people and resources out there that can help you on your journey to better health!
Hi....good evening I am shharyu I have eds ...suddenly I affected rectal prolapse so plz you will introduce or tell me surgeon n hospital for India .....I am unmrd but mrg after delivery problematic
Hello and thank you for reaching out! Unfortunately, we did not have resources in India so we would not be able to assist. If you are every in Texas we can help. Thanks!
I have actually been turned away at the counter of the dr office the day of 1st appt and was told, “we are sorry, the Dr. wasn’t aware that you have Ehlers Danlos. You are gonna have to find another Dr”.
I have HEDS and you have a better understanding of EDS than most.
I'm often asked how to spell it so they can Google it. Our biggest issue, is that even in the medical community there is little to no awareness.
Thank you for being EDS knowledgeable and helping spread awareness.
Hi Tanya, thanks so much for leaving a comment! We know many people are affected by this condition and we will continue to do our best to spread EDS awareness!
Great summary of EDS beyond the hypermobility. Clear, concise, yet gives weight to the diagnosis. It’s nice to have resources like this to show family and friends who aren’t familiar with EDS. Thank you!
Thank you so much for your kind words Jennifer! I'm really glad to hear that you found the video helpful in explaining EDS beyond just hypermobility. It's crucial to raise awareness and understanding, especially among family and friends who might not be familiar with the condition!
i too have hyper mobility EDS I went to the hospital and the nurse didn’t know what it was so i normally explain not many know it doesn’t just affect one part of the body but all over it’s like connect the dots some days can be overwhelming thanks for sharing a great video
Thanks for leaving a comment! I’m glad you enjoyed the video and we hope to continue to spread awareness of all that EDS entails!
Omg... wonderful video! I was diagnosed with fibromyalgia then i went to another doctor and they told me EDS... I have pain everyday. I see a neuro, gastro, orthopedic, urologist, rheumatologist. I have been dealing with this for 20 years and finally feel like I'm ultimately going to get the proper help.
Thank you for leaving a comment, I’m glad you enjoyed the video!
Who diagnosed you? I can't seem to get help.
@cindlou7335 my PCP and rheumatologist. I'm also seeing an immunologist tomorrow. I also see a cardiologist didn't mention that on the posting:) hope that helps
Do you know the film 'we are visible ' by Karina Sturm
Thanks for the great video! Increasing EDS awareness is so important! I work in the medical field (radiology), and even I didn't know what hypermobility was, let alone EDS until I was 29. I believe if more people, health care workers and patients alike, knew what hypermobility and EDS was, that more people would get diagnosed and recieve treatment.
You’re welcome! Thank you for leaving a comment! We hope to reach more people and spread awareness with every video!
I have Classical EDS, and I am very happy that you’re helping to bring Awareness to this. Unfortunately not many people understand what it is, especially when you have to go to the hospital ( my hometown hospital doesn’t have a clue what it is) as for the Hospital I’m in the Metropolitan City( Capital City of my state) they do know what it is. My Neurologist is the one who dx me. He also treats me for my Epilepsy, Dysautonomia, and Migraines. I have MCAS and I have broke out from CT contrast Solution that’s how we found out about it plus, I have Allergies to many different medications.
Hi Shannon, thanks so much for leaving a comment. We hope to continue to spread EDS awareness to help people like you!
@@parrptThank you so very much I appreciate everything you do!
You're welcome! @@shannongreenwell1278
Do You mind be asking ,how your neurologist diagnosed you please my rhumatoligist no interest in Ed's only time he thinks a dx in important is if it's vascular ..so dx me why had ,even though only reason not is family history none except my son hypermobile ,DcD and asd ...and feels my skin whilst stretchy not enough ...anyhow have appointment with neurology soon, for numbness and headaches,any ips how do suggest looking to see if Ed's ? I live in Ireland and no geneticist here or clinic or hospital for it ....very few get dx
Please and thanks
Are you also neurodivergent!?
I am not diagnosed. I am a nurse though and I know I have this rampant in my family. My issues are nausea in morning often, hands burning in pain in mornings (neck shifts). My THUMBS pop out slightly. My wrists pop out. My middle finger is crooked. I have to pop my clavicle back alot. My neck is subluxed (easy to pop). constipation. Bladder issues. Heart rate racing often especially after squatting. My knees get loose but don't pop out (my sisters does). My hips get out of joint/snap. My flat feet HURT and roll too much. Oh but I loved doing splits, putting my legs behind my head, and of course the thumb trick.
My 9 year old shows up with legs that turn 180 in the socket? 😮
Yes, these are all typical presentations for EDS. Some are more severe than others but we always recommend finding a specialist who is well versed in this condition to provide a more specific plan of care
Do you have resources for patients to ask their PCP? I fear my fibromyalgia diagnosis may really be EDS.
We will be putting together a video of questions that people can ask for their PCPs here soon!
AuDHDer (commonly associated) and my great aunty couldn't yawn too far without locking/dislocating her jaw. Can do the thumb thing. Currently got back of the knee pain. It's cold and I've been running around after my daughter. But I don't know if I exactly fit any of the types..
Excellent video! I wish you were in my area here in Florida. Are you aware if EDS can get worse for women in menopause years? I feel that it was a real issue for me in puberty and now it’s more of an issue again at 51 years old.
This is a great question! From our experience, we do see flare ups occur during puberty and menopause but then dissipate afterwards. Since each person is different, the severity will vary from person to person. Hope that helps!
I went to the doctor to get evaluated for ESD But I was not given an evaluation, I was given access to free Physical Therapy that I have right to now but I wonder how I can get a proper evaluation
If you are wanting to get an eval, we would love to help you! You can fill out our inquiry form here: parrpt.com/contact-and-scheduling/
Thank you Dr “you sound more knowledgeable than most drs here in Jax Fl , l been struggling with this for years, l didn’t know that eds was a connective tissue disorder, l have these nodules under my skin everywhere,since l was a child l have had most of the symptoms, pain and every thing else has too , l have been trying to tell doctors for years but they thought l was either a dope addict or a psychopath , when l would get these terrible flares either from a uti or gastrointestinal disorder or something, emergency room personal would interrogate me especially sense l have gotten older l am 76 in June still trying to get something done. it’s nice to see people taking notice eds and connective tissue God Bless You Son ! 🙏🌸🙏🇺🇸🙏🌸
Thank you for sharing your story. It's unfortunate that you haven't received the understanding and care you deserve over the years. I hope to continue to spread awareness to help people like you. God bless you too, and I wish you all the best in your continued journey towards better health!
My mother was diagnosed with fibromyalgia but we now think she had EDS. She had high blood pressure and died aged 64 from heart failure. She had multiple pain points every day. Since it's genetic and I have similar issues (hypermobility, numbness, bad circulation, back pain, loose joints, etc.), how can I get tested?
Thanks for your response! There are various ways to check for hypermobility but given that you suspect that it's genetic, typically genetic testing is recommend. Keep in mind that hypermobility/EDS cases are not always positive on standard genetic testing which requires further assessment of not only hypermobility testing, but symptoms and other related presentations.
My daughter was diagnosed with HEDS and my son(deceased) and i were diagnosed by proxy. I was on prednisone for 40 plus years but my new PCP finally got me off. Since going off my pain has ramped up 50% or more, now in my hands, neck, hips, back ect . Is there a good place to find braces like compression for the hands? Thank you for great video
Thank you for the comment! You can get off the shelf braces and splints at most pharmacies but if you are wanting a more custom brace, you will need to see a orthotist (your MD can recommend for you too)
Any advice for a specialist in NC?
Thanks for reaching out! Here are a couple of resources for you to look into regarding EDS doctors and support groups: www.shayahealth.com/ehlers-danlos-syndrome.php I wish you all the best moving forward!
How do you know you can trust a PT? In NZ my daughter was given neck exercises that caused her to miss her final year at school and become bed-bound and permanent damage. It's like they don't even know how to read the imagery that can be done. It feels like PT says it can be treated with no accountability for the damage they do when they don't have the right training. EDS is complicated.
EDS is very complicated, which is why we have dedicated the last 15 years researching and making sure those with this condition receive the best treatment possible. We are sorry to hear about your experience with other clinicians.
What do you do when you hurt for a week after treatment?
This can be 1 of 2 things. #1: Could be a rebound effect (meaning that the body is making changes in posture, neurological functioning, etc, which is a good thing but the body has a tendency to hyper react before it gets better moving into the following treatment. #2 The selection of treatment interventions may have not been appropriate for what you are dealing with. This would just required a discussion with your provider to modify a few things so that they can better help.
Where are you located?
We have a location in Austin, TX and Houston, TX!
What about the people who can’t afford your clinic?
There are many facilities nationwide that offer services for those with EDS. I would suggest researching more and seeing if they also provide individualized services for EDS-hypermobility syndromes
@@parrpt I live in Houston, do you have any suggestions? I’ve been referred to y’all by three of my doctors over the past year or two
@@erin3151I’m near there too. Let me know if you find one, please 🙏🏽
@@erin3151 Here are a couple of resources for you to look into regarding EDS doctors: www.shayahealth.com/ehlers-danlos-syndrome.php
Ive been searching for help the doctors think they know how i should feel and never want to actually listen. Ive had progressive issues since I was a kid i have surgery an all kinds of treatments that don't help not sure if anyone else feels lonely and unheard from the people around them like i do 🥺☹️😞🙁
Do you have seen the awareness movie of EDS bei affected Karina Sturm 'we are visible '?
@@qwertqwert99999
No sorry I haven't seen anything about EDS and most people don't know anything about it including the doctors
Thank you for sharing! I'm sorry to hear that you're feeling this way. It's incredibly disheartening when doctors don't take the time to truly listen and understand your experiences. Feeling lonely and unheard in your health journey can be isolating and frustrating. You're not alone in this struggle, and your feelings are completely valid. It's important to keep advocating for yourself and seeking out healthcare professionals who will listen to your concerns and work with you to find solutions. Additionally, connecting with others who may be going through similar experiences can provide valuable support and understanding. Don't give up hope, and know that there are people and resources out there that can help you on your journey to better health!
Hi....good evening
I am shharyu I have eds ...suddenly I affected rectal prolapse so plz you will introduce or tell me surgeon n hospital for India .....I am unmrd but mrg after delivery problematic
Hello and thank you for reaching out! Unfortunately, we did not have resources in India so we would not be able to assist. If you are every in Texas we can help. Thanks!
I have actually been turned away at the counter of the dr office the day of 1st appt and was told, “we are sorry, the Dr. wasn’t aware that you have Ehlers Danlos. You are gonna have to find another Dr”.
I am so sorry you had this experience. We hope to spread more awareness of EDS so this doesn’t keep happening!
What’s the treatment for pots?
We have a full blog and video coming out about POTS at the end of this month for POTS awareness month so stay tuned!
Look like Peter Andre good video
Thank you, glad you enjoyed the video!
@@parrpt do you see much central sensitisation in eds
14 subtypes now… constantly evolving from the progressive knowledge
Constantly evolving yes!