As I write this evening about all the interactions and procedures I have endured the last 2 days. Endured maybe a harsh word, because the people who have either volunteered or who are participants are beyond incredible. I may be the youngest person at this conference, but I learned today that there have been confirmed diagnoses at the ages of 7 and 9. This disease may not be as rare as once thought.
The technology that they are now using to test is extremely high-tech, and the data they are collecting is very impressive, but will become increasingly more expensive to gather. They may not find a cure for OT from the data from this conference, but this seems to be the best set of trials that they have had, and I can see them getting better with every one they have in future.
Yesterday I had an eye exam that actually showed tremor in my eyes after a period of time. I had a virtual reality test that was incredibly fantastic and terrifying at the same time. I also had an MRI that was not your father’s MRI. It was 45 minutes long, with no music, no sleeping and a 15 minute period where I had to keep my eyes open and “clear my mind”. Very exhausting day.
What makes this experience so special is the people who I have met. People who came here of their own cost and from as far away Australia. The average diagnosed age is around 56, but some of these people have been dealing with symptoms for 30 years. Absolutely amazing. They are as positive as they are wonderful. I no longer feel like a victim of a rare disease. I am now part of a fraternity of people who could make anyone feel empowered.
The feel sorry for yourself parties are over. It’s time to go to work to raise more awareness and money for the necessary research!!
Thank you so much for reading and sharing. As always God bless!!