I love going to IDF meetings around the U.S.   There are so many wonderful patients to meet, some for the first time, and some are already old friends.

Everyone has a different challenge, and everyone has gone through the ‘I was just diagnosed phase.’  We all know what that feels like- and it’s great to be able to help a newly diagnosed patient wade through the fear and trauma by holding their hand as they make their way.

The IDF held a patient meeting in Chicago in May.  I attended it with Aaron, the rep from BioRx  for that region.   We heard several great physicians speak- namely Dr Ramsay Fuleihan from Children’s Memorial in Chicago and during the Question and Answer session, Dr. Javeen Akhter participated as well.    The surprise guest was Dr. Wendell Richmond who came to listen, but contributed to the Q & A with answers that were right on the mark.

The doctors spent quite a bit of time discussing the relationship between having an immune system that is out of balance, and, especially in the case of  CVID, autoimmunity.   Thus, CVID and autoimmune disorders seem to go hand in hand.   Let’s see- last count- I have 4.

They also reiterated the fact that PIDD patients, especially with T-Cell deficiencies, should NOT have a live vaccine.   Make sure you remember that when they tell you to get a shingles vaccine, or any other LIVE vaccine!!

Some of my favorites from the IDF Conference in St. Louis last summer were in attendance too.   Kristin, a new fan of Vivaglobin, and her Mom and Dad were at this meeting.

Kristin and I are in the front row (we both love our Vivaglobin) and her parents, Sue and Rich are in the back, as well as the Vivaglobin rep, Kim Clarke.

I guess Dr Wendell Richmond was making both me and Kim Clarke laugh.

What in the world is this you ask??  One of the patients, Faye, is gluten intolerant, and ordered a delicious gluten free meal- but, alas, this VERY STALE COOKIE sat alone and dejected.

It sure seemed funny at the time.

Hope to see all of you again soon.