What is Ehlers-Danlos Syndrome? | EDS Awareness Month

In this video, EDS specialist Jonathan Parr (PT, CSCS, EP, MCMT, CBIS) covers EDS Awareness Month. If you are dealing with a hypermobility syndrome or vestibular dysfunction, chronic pain, GI dysfunctions or bowel disorders such as constipation or irritable bowel syndrome (IBS), bloating, recurrent subluxations, dislocations, or autonomic dysfunction, our myokinesthetic technique and specialized physical therapy treatments for your specific type of EDS could be a huge help and provide you with a lot of relief.

We utilize hands-on manual therapy and myokinesthetics to treat:
– EDS | Ehlers-Danlos Syndrome
– POTS | Postural orthostatic tachycardia syndrome
– Hypermobility & dysautonomia
– Chronic pain, fatigue & illness
– Neurological disorders & brain injuries
– Sports or work-related injuries
– MS, strokes & seizures
– Scar pain
– Bowel Disorders such as constipation, IBS, or gastroparesis
– Gait and mobility issues
– Knee pain, shin splints & plantar fasciitis
– Neck pain & shoulder pain
– Back pain & leg pain
– Gout, CRPS, and inflexibility
– And much more!

Jonathan Parr PT, CSCS, EP, MCMT, CBIS

[tanyalynnowens]

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.

[annegreenwood]

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

[jenniferl]

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!

[cyn]

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.

[ehlersdanlosandi]

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.

[shannongreenwell]

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.

[womanatwellworshiptheFather]

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? 😮

[KitKatB]

Do you have resources for patients to ask their PCP? I fear my fibromyalgia diagnosis may really be EDS.

[florabraswell-nmre]

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 ! 🙏🌸🙏🇺🇸🙏🌸

[melanie.c]

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.

[kathybramley]

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..

[jwilleseries]

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

[painiacs]

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

[nicky_bee]

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?

[Carsnbikes]

What do you do when you hurt for a week after treatment?

[KarenBurton-jb]

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.

[lisalisams]

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”.

[erin]

What about the people who can’t afford your clinic?

[ninadunn]

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 🥺☹️😞🙁

[SHARYU_NIMBBALKAR]

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 am unmrd but mrg after delivery problematic