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
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.