Life with Ehlers Danlos Syndrome

My everyday life with EDS

Category:

People & Blogs

Tags:

• Ehlers
• Danlos
• Syndrome
• EDS
• disease
• painful
• everday
• Gabrielle

[rklhughes]

My daughter is 3 years old and still unable to walk, the doctors seem to think she also has type 3 EDS and I was curious if this effected you when you were a a toddler, did you have mobility issues?

Like my daughter tries to walk, however she is super stumbly if that makes sense, she stumbles from one place to another...

[gabbynotgorgeous]

@rklhughes When I was a toddler I could walk, i just stumbled a whole lot. It seems the taller i got the more i would fall. When i was 3 i broke my elbow by simply loosing my balence on a playground. I was heavier as a child so when i fell it tended to hurt more, now I am thin so it doesnt hurt as much when i fall but i fall a lot more frequently.

[EDSguy1]

Thanks for making the video. I have EDS Hypermobility. The geneticist who diagnosed me told me that this is one of the most common genetic issues that she sees. So it is more common than 1 in 10,000. She said it is "in the hundreds". And there are studies from Iraq and Nigeria where 34% and 43% of those populations have EDS respectively. So almost a majority of people.

[gabbynotgorgeous]

@EDSguy1 yeah, it seems that people never really put EDS in consideration when they have a lot of problems with their joints. the numbers are increasing because EDS is becoming more mainstream and their symptoms seem to match. my moms friend had all the symptoms i had, and when she was a kid she was just clumsy. so i think more people are becoming more aware.

[200laura002]

Can you play any sports with these conditions?

[gabbynotgorgeous]

@200laura002 I'm not really supposed to.

but I am on a competitive cheerleading team which probably is not good.

they also say swimming is good for the joint problems and things

[fletch8538]

Gabby, you are a very beautiful person not just outside, but inside as well. It is very brave of you to post this video. I was diagnosed with EDS a few years ago after seeing almost every type of doctor you could think of. I have had reconstructive surgery on both knees, ankles, and a shoulder without great results. It's so important not to damage your joints. After the damage is done, there is no fixing it. I have about 15 pins, and 2 rods in my body and am in constant pain 24/7. I have found

[DezCailen]

I have type 3 and I can turn my arm 360 degrees

[katelynisreallyhot]

@rklhughes it affected me as a toddler a lot but unfortunately i didnt know what was wrong with me until i was 16. so be greatful your drs are being helpful. you are very blessed and im sorry your son has to deal with this but i can assure you, it will make you and him a stronger person because of it, as it did for me and my parents as well.

good luck and best wishes!!

[LucaBlightBadass]

Ive got diagnosed with hypermobility syndrome but im different im not flexible at all, and i have realy strong muscles, i can do 60 pushups. I have minor scoliosis, i have minor stretchy skin my joints click alot and my joints do feel lax. I think its cause ive done manual labour and weightlifting alot of my life. Wierd huh confuses me when i dont hit all the critierea.

[neartpuppy]

Hi! I also have EDS type 3 :) It was a relief to finally be diagnosed after years of wondering what the heck was up!

[Zamester]

Nice belly button ring haha... I have EDS too! how old are you?

[skinticket113]

Hello there, I to have EDS since I was born and I'm 20 now..... I have type 6 and 7a & 7b, I was born with my hips dislocated and I always wanted to meet or talk to a person that had this syndrome as well..... Having this illness puts many struggles on life and some people don't understand sometimes how it feels to be in a world of pain thats 24/7.... Though we may not look as if there's many things wrong with one another we tend to hide it with a smile here and there..... To those who have EDS

[piggyfrogg]

Hey guys/girls! Type 3 here and i try to do some exersices and swim alot. Ifeel like swimming in warm water is the best for now since im having problems moving at all, its nice to move abit after beeing unable to move for a long time :) tho id rly like to get so good that i could do some kickboxing or somthing like that, just hope i can continue to use the computer

[Nathan6845]

Such a cute girl I have Ed's type 3 also have dislocated both knees before and can do both shoulders.