Hi.

My name is Nancy and I was born with IL although it was not
diagnosed until I was 23.  I am 57 years old.  The condition, also
called Waldmann's disease was not coined until two years before I
went ti NIH for a diagnostic workup.  I have mesenteric involvement
as well as lymph masses in my belly. My ankles swell sometimes and
I cannot fight viral or yeast infections very well because of immune
compromise in my intestines.

I have tried many treatments-remember this was in the days before
TPN, etc.  I  have been on a low fat diet since high school, used MCt
oil for about 6 years and found TPN with albumin and diuretics to be
most effective. I use Boost/Breeze as a supplement now, as I no
longer have TPN (no more access sites for the central line).  I used
TPN for 10 years.

I am the oldest of five girls in my family.  No one else has IL, nor do
my parents.
I was able to go through public schools, nursing school and college.  
I worked as an oncology nurse for 20 years before the IL forced me
to retire.  I had used all my reserves of energy.

I an happy to answer any questions about my experiences with IL,
TPN, getting disability and general support.  The support, I think, is
very important.  I had no one else to talk to while I was growing up
and support would have been helpful.  Just to say, yep, been there,
done that, can relate to what you are going through.

Nancy Groat 2/23/1947 - 6/2005  She will be greatly missed.
It's not the size of the dog in the fight
it's the size of the fight in the dog.
Mark Twain
Little Leakers
Meet Nancy