Відео

Thank you! Everything you said...

Can’t everyone bend thier ears?

EDS seems to exist on a v wide spectrum. From v severe to more mild. I think I have a mild version of it along with two of my children. We have v soft skin. I used to be quite flexible but at 51 not so much. My children are v flexible though. My son is flat footed and his ankles roll inwards. He & I both have long fingers and toes. My daughter is shorter than average and v petite. I think that is also a sign of EDS. The problem is with milder cases is we don’t get dx & no one recognises we’re dealing with more pain & fatigue than most. They think we’re just lazy with a negative attitude. My husband isn’t interested in health so has no interest in following up further and doesn’t ever notice any of the little signs that maybe we have health issues. He said I was a hypochondriac for thinking I had things wrong with me. The only health issues he worries about are his own (stage 2 diabetes) which is easily identified by the average doctor, recognised and treated. There is so much ignorance about these hidden health condition. I think many of my friends and family alike have concluded the same thing about me due to my comparatively low energy levels and reluctance to do high energy activities that I know will take too much of a toll on me afterwards - while they will recover quickly, I would take a week.

M r props. M r not! O s m r. O s. M r props!

Loved it. This was childhood.😢 Miss them all

Great video Thank you!!! So proud of my heritage!

How did you pay for all the surgeries?

I have had so much pain and just have felt so discouraged that doctors just kept telling me I am fine when I felt 90

Yes I have always been proud of my Italian heritage, both my parents were born in Italy, my father was born in Bari, my mother was born in province of Napoli, and all 4 grandparents were also born in Italy, I was born in Queens New York, but we lived with my maternal grandparents, and I lived in Italy for awhile, this was my heritage and my passion, so I learned to speak, read, and write fluently in Italian, I have kept with the Italian customs,and traditions, for me it has been and still is a joy growing up Italian.

Thank you for your encouraging words to us in the midst of such pain & now teaching others like myself.I have just been diagnosed at 67 & my first dislocation was 10 yrs my knee cap & both knees then @ least 100 times by 20 yrs (of course 2 total knee replaced, I have most of what you shared but not so severe. Like you my life has been Drs & I’ve tried most alternatives because of the pain. Until I had a broken back with chipped & splinter bone my L spine with bulged & perforated discs & could have been a paraplegic …..all from a Chiropractic adjustment (the twist) my neck has totally fused itself also I believe from the twist. I didn’t have pain from the Chiro adjustments just the end result the fusion😳. Thank you again you were the best explanation to help me understand my life …I inherited EDS from both parents now I understand!,,Kind Regards Elaine💞💞💞💞

😮😮😮😮😮😮😮😮😮😮😮😮😮😮😮😮

I have hEDS, the hypermobility version where the main symptom is hyperflexible joints. I've never popped or dislocated a joint but I have bent my ankle 90* many times. I can also bend my fingers back more than 90* + a lot of pain. I've had joint pain all my life. It wasn't untill I was in my late 30's that I finally got some answers. Besides hEDS, I have ME/CFS and Endomitriosis. A pain/fatuige jackpot! Even though I have been examined and gone through all the tests and my medical journal states that I have these conditions and illnesses, I have yet to be offixially diagnosed with them since my GP doesn't believe in any of them. She's the third doctor I've gone to that dismisses me at hand, I'm looking for a 4th. I have only ME/CFS and Depression as formal diagnoses and everything is blamed on those two. "here, have some antidepressants", like that'll solve anything.

Was diagnosed with hypermobility and fybromyalgia in my early 40s (nearly 49f) and since my stomach has got worse (gastroperesis/paralysed) and I found out that my joint pain was actually sub/dislocation I started to research things. I had wrapped and braced my own joints to cope with any weight bearing activities and found out about eds. So dreading the drs visit I went in with a list of symptoms and he ordered xrays and mri. In the meantime the dr had researched eds and gone through my records thoroughly and confirmed that he suspected eds. I'm now waiting to go to rheumatology for a full diagnosis. I'm so greatful that the dr didn't shoo me away and actually took time to listen and research in his own time. He has seen me for multiple ailments and I always try to see him and only him as its so important to have continuity so that all the pieces of the puzzle can be put together. Thanks for the video, was very helpful.

Thank you thank you thank you

My daughter, who is 16, was just diagnosed with POTS which has led us to EDS because POTS is a symptom of EDS. I think it can also exist independently of EDS, but as I looked into EDS I realized that this is what my daughter has. I was wondering before watching this video, if it was worth getting diagnosed officially because there didn’t seem to be much they do about it, but now i know i need to get right on this. My daughter has always had daily dizziness which concerns me because of what the speaker said about a kink in the brain stem. I am so glad i stumbled upon this informative talk. Thank you for sharing and educating.

I have EDS and yes, chronic widespread pain…. Ugh! I have been starting to show signs of other complications that I am going to talk to my cardiologist about as well as my PCP. I have PCOS , too. My Neurologist is the one who diagnosed me. I was “ flexible “ as a young child, not so much now because I am 48 years old. My EDS has affected my eyes and my eye doctor is going to be watching them. I have Epilepsy even though it’s not due to my EDS ( that I am aware of). I get headaches, GERD, my hands cramped up when I would use a pencil ✏️. I had a lot of the “ red flags “ as a young child! And I bruise easily, then and now

Hello

I was 37 when I finally got diagnosed with hEDS, Cranialcervical Instability, Mast Cell Activation Syndrome and PoTS, which was just last fall. It took us hiring out of pocket a private concierge doctor who sat down and listened to my entire story and life. Then I received the confirmation I’ve been looking for for decades. It changed everything.

Just remember when you have EDS, you already have inflammation due to lax muscles so you need to stay away from sugar and high fructose corn syrup (HFCS). Sugar is an inflammator especially genetically modified sugar and HFCS. If you are going to eat a little bit of sugar than it should be pure cane sugar. Children are more susceptible because they tend to drink juices and should drink milk or water (or only drink a little homemade juuce) Otherwise, they will be achy all day and night. I only have the occasional sweet drink to prevent basically fibromyalgia and gouty arthritis. In fact, I have found that certain foods trigger some of my muscular pain if it's not connected to subluxation. I try to stay away from high fructose corn syrup and msg. Otherwise, I will have a bout of gouty arthritis all over my body.

Growing up in the 1960s and '70s, I was told my pain was just growing pains. Every night I would massage my legs, maybe have a hot water bottle, but not much else because there was nothing more to do. Although I do find taking magnesium before bedtime helps a little.

Fair play for popping your joints back in yourself.

I have classical eds and count myself lucky. I have never had any pain because of it (apart from shoulder dislocations) I am 49 and I've had 1 surgery on my shoulder and a heart valve repair coming soon. Dislocated my shoulder about 4 times. Was asked at school about parental abuse as I was always bruised up and have a few scars on my forehead etc. My dad always said that I was always 'in the wars'. Have led an active life, played footie for years and took judo from 11 to 16. As I say, count myself very lucky.

EDS must be helped by palliative care since we have no specialists available. PLEASE HAVE SOME COMPASSION!!!

I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html

I’m so angry. I will turn 50 this month. After being dismissed by doctors and told I’m crazy or seeking pain medication I know I have this. I have seen a few good doctors that have looked at imagining of my spine and have been concerned. They have not offered many solutions, of course. Just told me to deal with it. I think me being so flexible confused them. I was taken out of gym class regularly in middle school because of kneecap dislocations. My shoulders are so painful now that I can barely lift anything. Please listen to your patients doctors. Don’t think everyone is lying. My body is done at 50. I have no life anymore. No doctor and no help. This is no existence.

I have a couple symptoms, but im not diagnosed: the ear thing you mentioned i can dislocate my thumb unexplained bruising fatigue

Thanks! Excellent tutorial on prop repairs.

My 21-year-old niece recently diagnosed herself after years of doctors, tests, and misdiagnoses. I hope she can find a doctor who can ease her symptoms now. She’s got the speckled heels, hyperflexibility, fatigue, and gastrointestinal issues galore. It’s a rough thing to deal with, but having a diagnosis must help.

thank you Ciro, i like your name

I wonder how she is doing today.

I am a patient of EDS. I know what kind of pain it effects in life.

I’ve given up on trying to get a diagnosis. I’ve been referred to a geneticist by 2 different doctors and after 2 years, I have still never gotten an appointment. All 5 of my kids shows signs of ehlers danlos syndrome. My kids school knows so it is very common for me to get a call from the nurse to bring hip braces, knee braces, elbow braces, etc. my kids want to play sports and I have had to tell them no. They also get muscle knots and have to take them to get a massage when our massage gun isn’t enough. It’s frustrating knowing there is no way to get a diagnosis. Have thought of traveling to England to try to get a diagnosis since it’s more well known there.

I had braces in 3rd grade

Thank you

Had to quit drinking all together to pay attention. I kept hurting myself.

The symptoms you describe... I don’t have them all, but it was like the words I’ve said a hundred times, never realizing it was EDS. You even mention things I’ve heard my grandmother suffer from, my mother’s experience... Wow. Great talk. Thank you.

Telling on other men... GOOD MAN CODE ... SPOS.... Probably his own shit. What does it matter who did it?

Your story is so similar to mine. My skin is less flexible, and I’ve had chronic musculoskeletal pain since I was around 5, bad enough to keep me out of sports, I was in adaptive PE. Also I haven’t been able to wear the brace jewelry because my skin reacts to any metal. My journey of diagnosis was similar too. I happened to have a substitute doctor once, the third time I went in for dislocating the same finger.

Excellent articulation and knowledge. If only seen ten years ago...Alas, still valuable. Shared with my four daughters...40-30 years old and all exhibit some of it. Pray they take it seriously as at age 68 almost just diagnosed!!! FM and other dump tank only. Glad finally connect the issues with the connective tissues. Maybe four grandchildren can be helped the most! Some show some signs. God's grace and mercies 🙏💕 I can vouch the progression. In a bad way every system above joint pain and escalation. Pray I can cope and get the help I need.

Where do I get these hand splints

I have eds, and as a male there aren’t many groups to turn to which is unfortunate

... Use what they call "computers" Lol

Are any of the other episodes archived somewhere? I met Kit while working in Dover 1999-2000. He was a gracious and fun guy. Thanks for sharing the two videos of his show.

Thank you so much for sharing your story ♥️🇨🇦🌏

Several real stupid questions by the interviewer. Duffus.

Bittersweet diagnosis.. First relief then depression bc of the Realisation nothing will change. The pain will never go away.. Ty for those wise words

I hope you are doing well I have Hydrocephalus which caused other nueorological problems and many surgeries You are a true hero...you and your family God bless you all ,🙏🏼

My daughter was diagnosed two weeks ago with EDS. She called me and and said, "I think you have this Mom." I had heard the name and knew it was inherited. I started to research EDS and just began to cry. It was as if my whole life was written on these websites. Every thing that was wrong with me from the time I was young is listed in these websites. I am getting tested next week.

Love this 🎥....love my family❗ Love Sicilian life❗

So grateful for this video! The struggle is real!!!!