Patient day this year was very interesting first having Allen making his appearance this year since I was pregnant with him last patient day. It was also exciting for patients and caregivers getting to meet him since I blogged about my pregnancy the entire time. Everyone felt like they already knew him which was very exciting for Eric and I. I was just so flattered and speech less from people telling him how handsome Allen is and he is such a good baby. Allen defiantly started a fan club in LA.
Two very exciting things happen this year at patient day the first was Victoria Jackson and Ali Guthy released their book “Saving each other.”
The second was the release of the patient resource guide “What you need to know.” I have only flipped through a few pages on both books and it is hard to decide which one to stick to and finish the book. I have handed out several copies of the resource guide to my family members so they are more educated on NMO and what I go through. I am sure all of us get sick of hearing “ You don’t look sick.” Well I am read the book and understand how well I mask what I am going through.
I really did not get to stay and listen to all the Q and A panels since Allen wanted to go move around. I did get to go to some of the breakout sessions. The one I really enjoyed was on diet and nutrition with Elizabeth Yarnell since she is diagnosed with MS she understands what is the most healthy diet for us NMO patients. The other neat breakout session was the Patient Advocacy with Dan Behne and Derek Blackway it was really great to hear what other NMO patients are doing to help spread the word about NMO.
At the end of patient day it was just amazing looking all around the ballroom seeing so many NMO patients there with their caregivers. Every year patient day keeps growing with newly diagnosed patients that need help finding out more about NMO and then there are the patients that have been coming for years and just want to talk to our NMO family face to face. This year was my third time coming to this wonderful event. I loved I got to meet so many new patients this year in person since I have talked to them in the support group but now I have got to meet them in person.
Thanks again to Victoria, Bill, and Ali for all the wonderful things they have done for NMO. Let us all keep spreading awareness about NMO!