Possible new test for EDS I believe this idea has surfaced before

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In a message dated 8/21/2004 11:11:24 AM Eastern Daylight Time,

c-clark05@... writes:

Lot of questions are coming up on this so let me try to explain. In this new

study, Dylan was around the 30th patient. During the echocardiogram, they are

finding that every person so far has the same thing show up, that " normal "

people don't have. It is a prominent right coronary artery. She said that this

artery is showing to be larger and with a slightly different curve to it. She

also said this is not a bad thing. They feel is probably makes things better for

EDSers. I don't know if this is for all types or just type 3. They feel that

when they get to patient # 100, if this keeps showing up for every person,

they will look at this as a new DX tool. They are also finding many, but not

all,

have no gag reflex.

Cindylouwho

Hi All (especially my sweet CindyYouHoo (LOL...just kidding!)

:

Please don't take this completely & totally as the gospel. Because, as we

all do, at times, I am " memory challenged " ! (Darn those drugs!) But my memory

is generally much better when it comes to long term occurrences.

Back when we had the conference in Philadelphia, they ran everyone that was

there, through every department they possibly could, in an attempt to collect

data for research. It was using the theory, that basically we had a " captive

audience " ..... we had tons of people with EDS, all in one place & a medical

team ready to go, to run all of the tests, collect all of the information & then

publish the results.

In fact, at one time, very early on, it was originally intended that we would

alternate every year. One year we would have a " Clinical " conference, such

as this one, where we would collect data, which wasn't easy on us, but it was a

win-win situation. They got their research done & we got a ton of

information from the results, as well. And then the following year we would do

more of

a " Learning " conference, where we'd have lots of lectures, discussions, group

chats, vendors, etc.

While in Phila., all of the testing was done right at the University of

Pennsylvania Hospital (HUP), which was connected to the hotel we were all in, by

a

long converged walkway, of sorts. I know a tremendous amount of information

was collected there & many papers were written with the statistics that were

gleamed from all of the studies they did on us. They put us all through every

department they could possiby manage. And, one of the things they did, was an

ECHOCARDIOGRAM ON ALL of us. It didn't matter if you had symptoms or not. It

didn't matter what type you had or even if you weren't typed at all. I

believe the results of that study, would be of great interest to you now.

We also basically did the same type of " Clinical " conference at the Detroit

conference. Again they put us all through every department they could think

of. They utilized Hutzel Hospital, Children's Hospital (I think) and the Kresge

Eye Institute (there they were particularly looking for blue sclera, detached

retinas, etc.). I don't recall echos being done, although they MAY have been

done, in individual cases. They did however, even do tissue biopsies, on

anyone that wanted it done, which was probably everyone at that conference.

And actually, now that more of my brain cells have " kicked in, " I do believe

before both Detroit & Phial but surely after Phial, the year we were in

Connecticut, at the University of Conn., they again ran us all through just

about

every department there was & collected as much information as they could.

HOWEVER, that was pretty early on.

At that time, there was NO absolute documentation in the scientific

literature, that there were cardiac issues, in people with the Hypermobile Type

of EDS.

This is a prime example of how far we have come & how much information we

can gather at conferences & just how important it is to collect all of this

information. How else can we find out so much information under such controlled

circumstanes? Although, the new research grant that we now are about to start,

has me sitting at the edge of my seat!!! How exciting! And it's up to all

of us to make sure that these things continue over & over & over again.

In any event, I specifically recall that they DID NOT allow people with the

Hypermobile Type to be scheduled in to the limited slots, that were available

for cardiac examinations & if I remember correctly they only allowed people

with the Vascular Type to book the available appointments. And I remember this,

because something happened that still stands out in my mind, rather vividly.

Late one evening a bunch of us were sitting in the lobby chatting, when the

confirmation came down, that the cardiac appointments were not to be scheduled

by people with the Hypermobile Type. And, there was a woman there, that I

don't believe I had ever seen before & I don't believe I've ever seen since (I'm

not sure), who actually was even a physician herself, She said that she had

come to Conn., to, her first conference, specifically because she was having

cardiac problems & she had the Hypermobile Type. And she had come a very long

way. I apologize in advance, but in the interest of her privacy, I won't give

any additional descriptive information. I am sure you all understand.

To continue, she said that if she was not going to be allowed to be seen by

the cardiac team, that she was going to leave, right then & there, which was

basically, almost at the beginning of the conference. I couldn't believe that

anyone would make such a trip (though I understood & still do, her

frustration). So, I personally tried to persuade her to stay & suggested that

she could

try later on, to see if she could get to see the cardiac team & that there was

so much more to the conference, but she was adamant. So I actually checked

with the Board myself & they said that there simply weren't enough time slots,

so priority had to be given to the people with the Vascular Type & that was it.

The woman immediately got up, went to her room, packed up all of her things,

came back down & while we all were still sitting there, she stormed out of

the hotel, never to return. So, though many of us, myself included, do have

some memory issues, that is something you tend not to forget!

Another little side note about that conference, that has nothing to do with

this particular issue, but I thought was of interest, was they tested all of us

for the trigger points, related to fibromyalgia. Though there may have been,

I don't recall meeting a single person that had that test done, myself

included, that said that they didn't test in the positive range for a diagnosis

of

fibro. I don't personally fell that I carry that diagnosis, but that is my own

personal opinion. You can feel free to use that information, as you feel

appropriate.

So, here are 3 instances that I recall cardiac testing being done at

conferences. I hope this information can prove helpful. All of it should be

accessible. It might take a bit of hunting, but each would be related to

research

conducted at an EDNF conference. And, I think especially the one done in

Philly,

where they did an echo on everyone, should prove to be very helpful.

Take care all,