Ehlers-Danlos: Discovery Health Medical Mysteries

Discovery Health covered Ehlers-Danlos Syndrome in its show "Medical Mysteries". Though it was a good account of the patient's story, the emphasis on surgery needs discussion.

Category:

Education

Tags:

• braces
• collagen
• danlos
• discovery
• channel
• medical
• mysteries
• double
• double-jointed
• EDNF
• EDS
• ehlers
• ehlers-danlos
• flexible
• hypermobile
• hypermobility
• jointed
• splints

[SuperDoNotforget]

I a boy of 15 and i have it. Is it more common in women?

[ufo8mykat]

@SuperDoNotforget The verdict is out on that one, though women are more commonly diagnosed.

[Wolverineeeeeeee]

I live in Las Vegas and I'm going to UCLA for my IBS and EDS on Feb. 22. All the doctors I've been to in Vegas don't know anything about EDS. I also have heart problems all my life. Do you know if Dr. Alan Gorn has treated EDS before? I looked him up online but I can't find anything about him and EDS.

[ufo8mykat]

@Wolverineeeeeeee I've never heard of that doctor, but I always contact the doctor's office ahead of time to make sure that doctor knows what EDS is and understands how to treat it.

[TheBenoit101]

i live in nova scotia on the east coast...i am in desperate need of help, like right now! i can't sit around and let my fate be in the hands of the doctors here cause they've gven me no reason t have any confidance in them!  i had a horse fall on me 8 years ago and disloate my left hip really bad, didn't know at the time but the labrum is torn and partialy detatched i guess, hurts so bad i cant walk on it and the crutches are killing my body! i need to get home to my girls :(

[ufo8mykat]

@TheBenoit101 I'm lookin'! I haven't heard anything back yet...

[Wolverineeeeeeee]

@ufo8mykat Thanks for the advice.  I'll contact them in the morning.

[TheBenoit101]

@ufo8mykat hey...sorry took me so long to reply...been crazy busy with x-mas and im in the process of moving into a new house...well...watching my dad and brother move me into my new house and my mom and older sister set everything up haha but u get the point! I live in Antigonish Nova Scotia, i'm on the east coast of canada and i am still dsperate to find some help. i'm not sure what my dr is doing but i can't get ahold of her and i'm sick and tired ofsitting around! any help is great!

[thinking1960]

i was diagnosed back in 1982 and to cut a long and boring story short, my biggest help over the years has been amino acids, the ones i take are pretorius amino acid complex, its easier for you to google that than it is for me to include all the amino acids on that product, depending on your country it may vary, it is the same type of stuff that weight lifters use, i suggest giving it a test run for maybe 3 months to see if it makes a difference, but them at your health food shop

[ufo8mykat]

@LoveMoodyBlues88 Thanks for chiming in. It's hard to say, everyone has their own experience... but I just thought it deserved mention that so many surgeries is not typically safe for EDSers. I'm glad your knees are working out. :)