- to get the diagnosis or not.....

[Guest guest]

Wow, what a great question !

I think being formally diagnosed is an individual thing. Some here believe

that it's been a hindrance and others feel it is a blessing.

I would hope that being diagnosed with a rare disorder might be something

that encourages a doctor to learn more....but in reality, this is not always

the case. In reality, many doctors may feel uncomfortable or overwhelmed

with the lack of information or the inability to manage symptoms in their

patient easily.

Other doctors really do look upon this as a challenge and rise to it well -

it's just so hard to say really!

What will a formal diagnosis do for you? It may offer you piece of mind or

a sense of security knowing that there is a certain amount of validation in

your symptoms, and that there is a name for all of this. It may or may not

impact upon your life in many ways, it's hard to say.

There are other things to consider as well, and there are people here more

well versed than I, but some fear a diagnosis because of insurance issues -

again, this is something someone else should tackle as I am not completely

able to comment on the healthcare system in the U.S.

Regardless of the formal diagnosis or not, you might wish to arm yourself

with information, and get a good understanding of how you may progress -

which you can likely do by looking at your daughter. You may want to put a

name to what affects you so that someone who is familiar with EDS can treat

you appropriately....again, it's not an easy question to answer!

How have the rest of the list members here managed with a diagnosis of EDS,

has it helped or hindered?

Jill