Conference Wrap-Up

I promised a run down of my experience at the IDF Conference in Baltimore. It was pretty good, as far as information goes, but I always feel like it's the same few sessions over and again. I am usually able to get a few granules of information from the talks, but I always wind up feeling like they are all for the newly diagnosed. And not necessarily the newly diagnosed with certain issues, but the straight up new to the community folks.

For example: I went to a lung disease session, as I was just diagnosed with bronchiectasis, because it was supposed to be about new treatment modalities. Instead, they spent the time talking about common complications, etc. Which is fine, but it's hard not to want a little bit more in-depth conversation about what to expect. I did get some indication that my doctors are doing the right things, which is nice, I suppose.

New this year were some encouraging prognosis statistics... for the 60% of CVID patients without autoimmune complications... so, not me. It's kind of frustrating for them to start trumpeting about new statistics and such when they don't apply to so many of the patients. It's sad, too, because one of the hardest parts of all this is not knowing what to expect. I expect positive things, but sometimes it would be nice to have some sort of reassurance from experts.

I was especially encouraged by the survey results from the survey on women's issues they took recently. It demonstrated that CVID patients can have normal pregnancies, normal children, and all of that. So that was nice.

I have to say, though, sometimes the conference is hard to watch. Why hard to watch? Because it's so poorly done from a logistics standpoint. It was very clear to me, with my meeting planner hat on, that they were trying to save money. How was this so clear? No beverages. That's right. No coffee for breaks, coffee was taken at the end of breakfast, and not enough coffee was provided for all that wanted it after dinner. The Hilton had clearly been given limits for how much to serve and when. Sad, when you consider that most of the population needs pretty consistent levels of hydration not to feel like poo. Why would you not move dinner to a larger venue instead of doing 2 seatings? Why not have more "safe" foods instead of mayo-based salads outdoors in the summer? Why were foods not marked for allergens in a community with high levels of allergies? Eating anything but meat-laden things would have been difficult, so I guess it's good I'm not a vegetarian, vegan, or gluten free. YIKES!

Next conference is in New Orleans. I have now fully learned my lesson and will make certain to bring my own food to the next one, or have some brought in, along with as much liquid as I can reasonably carry.