Thanks for the aHUS conference at U of Iowa on Oct. 24-26. I haven't updated in a while and that is thanks to Soliris. It allows my wife and I to almost not have to think about aHUS. It was nice to take a weekend in Iowa and spend time hearing stories and listening. My wife and I came away with a lot. We understand the disease about as much as we can, but there are little details that we pick up.
1. I regret not getting a therapist for Phoebe when she was sick, and I think it is possibly something we should do. She deals with the illness so well, but my wife and I wonder if certain behaviors stem from having to deal with infusions every two weeks and the confusion that must cause. She is 9 now, and once in a while, she still asks if her condition is life-long and what that means. It was thanks to the presentation by the psychologist.
2. We learned about the possible new drug that can potentially be used for aHUS and it is a shot rather than an infusion.
3. It was very nice that my wife and I were able to get genetically tested.
4. It was uplifting to hear how the aHUS foundation has helped Iowa's labs and research.
If anyone visiting this site has not attended one of the aHUS functions, I encourage you to attend. It was nice for my daughter to meet others of all ages who have this rare disease.
Thank you, and I hope to see some of the same people again.