Kristin Means - Life With EDS

Kristin Means describes the devastating impact of Ehlers-Danlos Syndrome, EDS on her life and the signs and symptoms of a this hidden illness. Kristin address, in a heartfelt plea to unsuspecting parents to be conscious of their children's wellness.
To find more information regarding EDS go to: WWW. EDNF.ORG

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[Giggotaurus]

To all of you who are still struggling to get a diagnosis : Stay Strong.

[tracihorsley]

Thank you for sharing. I have EDS type 3, diagnosed about 6 months ago. My symptoms are not as severe. I have a 20 month old daughter whom I have already taken to an ortho doc about her rolling ankles, but they told me there is nothing to worry about. She only has flat feet, no big deal. After seeing this I am thinking there may be more I should do.

[natalieclad]

@lonelynannainflorida I dont know if tethering can cause similar symptoms that might mimic eds, but eds is genetic. It's something that's written into your dna not something you can develop.

[lonelynannainflorida]

Could the "spinal tethering" be a CAUSE, RATHER THAN AN EFFECT of the EDS?



[sinsofthesea]

Thank you I was diagnosed at age 10 with EDS in 1992. I finally got my finger splints in 1999. I experienced all sorts of mobility and flexibility issues in my teens. Now in my 20's I am experiencing bleeds. No one knows anything about EDS. Maintenance and management seem to be all over the place. A note to anyone with EDS. Getting a type diagnosis of the vascular type can make you ineligible for certain types of insurance late in life. Monitor AS IF. Avoid type diagnosis of vascular disorder.

[mylittlefishy369]

i was at a new doctor today be cause of my bad joints/pain (passed off of being loose) but FINALLY this doctor...i was barley in a room with him for 3 minutes when he said that i probably have EDS. it might be some type of arthritis, but have to get blood tests to be sure. Its between EDS and the Arthritis because im not super hypermobile, but have many of the other symptoms. this all started with my ankle in second grade, im in 10th now. Parents please listen to us when we say somethings wrong!

[FengRuiXuee]

I thought I was normal, blaming pain on other things for 25 years. For the past year my body has been crashing. Temporary pains has become chronic, and I found out my joints are not normal. Currently fighting for a proper diagnose. I'm having a HMS diagnose now but I and many others believe it may be EDS. Too many signs of EDS for it to be "just" HMS.

[kristinmeans]

Thank you all for the kind comments about the video! I am so happy it has helped some of you! I saw a genetic doctor, Dr. Francomano, who gave me my diagnosis. She is located in Maryland at GBMC. I also have an amazing neurosurgeon, Dr. Henderson, who does my surgeries. He is located in Bethesda, MD and is AMAZING!! And yes, I have terrible spasms in my neck and back. I think most of us do. Thank you all and I hope you all are able to receive some relief.

[dhsmom3]

Kristin, Thanks so much for your very inspiring video. Just wondering what type of specialty doctors made diagnoses for you and your son. What state are you located in and what suggested names of specific doctors or a hospitals that understands all of your symptoms? My family has been battling many of the same issues, but have not been able to get clear answers. We are in Chicago , but would travel. Have you ever had muscle spams in your neck or back? THX!

[alison20092010]

thank you Kristin for this brilliant explanation of EDS

from a fellow EDS sufferer