Hello All,

This syndrome is complex to say the least. First the difference
between a disease and a syndrome.

A disease affects and organ or group of tissues and causes them to
not work or work to much.

A syndrome is a "disease" that not only effects an organ or group
of tissues and causes them to not work or work to much. BUT, it
causes another group to not work, and then another, and another.

For example, the Thyroid produces a hormone that effects almost
every part of you... So, almost any part of you can also go bad.

We the people with APECED or the many variations of, have a
syndrome. Which is worse than the other depends on what organs are
affected.
For most people with diabetes, it is controlled, how ever those
with adrenal gland problems could have very serious problems or even
be fatal.

No two people are alike and the many variations and organs that
can be involved make this a nightmare for you and for your Doctor to
treat you.

Plain and simple... You need to find a very good Endocrinologist.

For starters, Who does your primary Doctor recommend?

Second, You can also contact your nearest University Hospital, ask
them for their Endocrinology dept.

Also support groups may be of help, after all that is why you and
I are here. "Hopefully I am giving sound advice."

When you do go to see a doctor, have a list ready for Him/Her.
This makes everything so much easier and faster for both of you and
less chance of an error.
"I use the computer, it makes updates easier."

My list has the following:

1) Name address and other personal info they will need.
2) Diagnosis' and the approx. dates of occurance.
3) Surgeries, all of them, NEVER leave any part of your history out.
4) Medications, with the dosages and when taken. (KEEP UPDATED)
5) All other Doctors that you see and a phone number for their office.

This is very important, you need all of your Doctors to be on the
"same page" if you want proper treatment.

(HAVE COPIES OF ALL LAB WORK AND STUDIES SENT TO ALL DOCTORS
INVOLVED IN YOUR CARE)

Remember, this is YOUR health, don't be afraid to ask questions.

Start a list of questions for your Doctor so you can't forget.

Keep a file of your records at home, ask for a copy from each
visit.
Your doctor should not have a problem with this.
If He/She does have a problem with this, "ask why."
Don't be afraid or intimidated to ask.
Again, this is your health, and you are entitled to this
information.

I hope this is benificial to all;

Sincerely
Jerry Armstrong
GRA1963@...