University of Utah Health: Autoimmune Neurology Patient Day
“The Autoimmune Neurology Patient Day was an opportunity for patients, family, and friends to learn more about the latest advances in Autoimmune neurology and to share experiences with other Autoimmune patients and caregivers.” – University of Utah Health
RUN was honored to have a table at the event!
We met new local patients as well as many patients living out-of-state that travel to be treated here at the University of Utah Neurology Department.
They used the large room to show patients about the TRAILS program at the U. They have adaptive equipment to get the patients out to play! Learn more at TRAILS: Technology Recreation Access Independence Lifestyle Sports
My three children are growing up to be incredible advocates for themselves as well as for the undiagnosed rare disease community.
Ava spoke to some of the patients and explained how she is shunt-dependent. We educated and advocated that we believe undiagnosed is a diagnosis if you cannot find the root cause of your disease processes. We shared about RUN’s network and handed out local and national resources.
We met a wonderful elderly woman. We chatted for awhile. Once she learned how we are living in the world of the undiagnosed and unknown, she walked off and said quietly, “Hoooow awwwwfuuuul.”
Ava and I looked at each other and laughed. We both said something at the exact same time.
“It is awful.” – Ava and Gina
We must find the humor in life and persevere, right?
Ava was in pain on the way to the event. I asked her if she wanted to turn around and go home. She said, “I would be in pain at home. I would rather be meeting new people and maybe we can help them.”
In all honesty, I was in pain too. We both persevered through the event and it was worth it. It is important to our family to help patients and their families by giving them resources and to let them know that they are not alone.
We met inspiring patients and we listened to their every word. Everyone has a journey. They may not be undiagnosed like us but they definitely understand the diagnostic odyssey very well. Most of the elderly patients told me it took years for them to finally receive a concrete diagnosis after multiple misdiagnoses.
We hope to continue on our journey to meet new rare and undiagnosed patients as well as anyone that is living with a chronic illness, invisible illness or suffers in pain. We are here for you and we support you.
The event was a huge success and we hope to be a part of it again next year!
A special thank you to Dr. Stacey Clardy and her entire team for inviting the Rare and Undiagnosed Network to be at their event! You are not only an incredible advocate for me, you are an advocate for the entire rare and undiagnosed community. You are such an inspiration. You continue to fight for all of us and you are knocking down walls left and right. Thank you for all you continue to do for so many patients. You are one of the very best! It is a true blessing to have you on my medical team and to call you a dear friend.
