ATT:daddio5600 Hello All Read this posting from another bord &had to post

[Guest guest]

Dear daddio5600, please send this on to Barbie & thank you for helping her!

Hi Barbie

I am so sorry for you, your daughter & your family. You have clearly been

give sooooo much misinformation. None of this is meant to be medical advice,

nor suggestion or referral. From my own experience, I can tell you......

#1 Years ago we used to identify different types of EDS using numbers. For

the last several years that has been changed & we now use names, instead of

numbers to describe the different types, for scientific & clarification issues,

that really aren't important to you at this minute. I would think just finding

out about your daughter's situation, is most important. You have time to

find out all of the other information a bit later & I would think that you

should, when you can.

What we used to call EDS Type 3, is now called the " Hypermobile Type " . of

Ehlers Danlos Syndrome.

#2 I personally have the Hypermobile Type as well and I know dozens &

dozens, likely over 100 others with the same type. Some people dislocate from

time

to time, some can actually dislocate often, some can do it if they try to, but

that would not be very smart & some don't truly have complete dislocations,

except maybe if they have an injury. I know people at every place, from

dislocating regularly, to barely dislocating at all. That doesn't mean they

don't

have the Hypermobile Type of EDS. You can look at the EDNF website, at

Ehlers Danlos National Foundation (ednf.org).

At the top of the page you will see little blue rectangular boxes. Click on

the 2nd one, it says " About EDS " . You will see a " drop down list " . Click on

" Types of EDS " that will explain it quite simply. I would also think that

you would want to look at all of the other items on that same drop down list &

as many other part of the site as you can. There are open discussion groups &

more than you can believe.

It is not uncommon unfortunately, to have confusion like this, when a

diagnosis is first being made. Thank goodness, through the giving work of

countless

people, much more information is now available. I would suggest that you be

in touch with the Ehlers Danlos National Foundation & you will surely be given

correct information, a kind & knowledgeable ear & much comfort. I wish you

and your daughter well & am sure you will all gain much, associating with the

organization. Fortunately you went to the right place & people were immediately

willing to help you. Wishing you all well, Schoenberg

Central NJ

Again, None of this is/was meant to be medical advice, nor a suggestion nor a

referral. It is only from my own experience.