Jean

[Guest guest]

Dear Jean:

There is an article from a study, I think at s Hopkins linkuing

EDS, CFS and orthostatic hypotension. The idea is that EDS causes (in

some cases) pooling of blood in the leg veins if the veins themselves

are stretchy, ythen they can hold mopre blood. They are also slower to

release that blood back into the circulation when the person stands,

causing increased (or sometimes decreased) heart rate, decreased BP,

lightheadedness, etc. You can also have pooling in pelvic veins.

I have been told I have features of three types. The diagnosis was made

by someone who has a rare type of EDS named after him and has done some

writing on EDS. He also told me I may have " Joyce type " because I have

so many symptoms, they run over actually four types and affect every

single body system.

From what I have seen on the list, I think what the patient is told

depends on how the doc interprets the guidelines. Some will just

diagnose the type which the patient has most features of. Others, like

mine, told me I have features of Classical, Hypermobility, and Vascular

- they list all the types the person has features of because the

physician fels this is a more complete representation of the person's

EDS symptoms.

I was not told I had one type of EDS with features of others, I was told

I had features of three and the Classical and Hypermobility are about

equal in terms of number of symptoms. Saying I have Hypermobility type

is not really correct as that and Classical encompass about 40% of my

symptoms each and the reaminder fall into vascular type. Personally

(and some may not agree here), I think it helps to be told what you have

features of, because if docs are just thinking one type, some canniot

seem to see beyond this and then problems may be missed or not treated

optimally as if docs knew the patient had an assortment of symptoms -

regardless of how the patient is labelled. I have a one page write up I

take to physicians which lists about 40 problems I have due to my EDS,

not just stating the type. This way, I sort of force those who treat me

to see EDS and the symptom conglomeration more so than types. I am

always certain to make known potential serious complications of EDS.

They take precautions when treating me since they know of the vascular

features and my widespread symptoms.

I think if docs even recognize just how many of your symptoms are due to

EDS and know the potential problems of EDS I think that is most

important; if they have an open mind and realize that you may fall

mainly into one type but there is the potential for other problems seen

with other types, that will help your future treatment more than

anything. From my many ex[periences in the ER and with otherr docs here,

many do not realize there are even subtypes so that is another reason to

try to focus on what YOUR symptoms are, knowing EDS has the potential

for a myriad of symptoms and problems which can be highly variable from

one person to another.

Good luck,

Joyce