Hi my name is Avery Allmond and i am so thrilled to share my rare disease story about living life with a disease called MOGAD.
I’m now almost 23 (my birthday’s actually on rare disease day) and I was diagnosed at 19 years old.
At the time I was a college track runner with 90% of my 4 years covered by scholarship. I was a short sprinter and worked out 2-3 times a day and had a clean diet. The summer before my sophomore year of college, I began losing my eyesight followed by paralysis from the neck down.
I never would have imagined that I went from a healthy active young adult to a bedbound sick one.
Since being diagnosed, I have been in and out the hospital consistently along with receiving chemotherapy, immune suppressing infusions, and every test possible.
What inspires me to thrive is helping others. I firmly believe the giving is the best form of medicine. I started a non-profit called Couch Pennies Foundation in 2018 to be able to help others with rare diseases like myself. Those that I have had the honor of helping over the past three years, have given me the inspiration to not surrender to my rare disease but to attack it with grace.
I think of the day I woke up both blind and paralyzed. I know that day will come again, and every day that I get to wake up full sighted and fully moving is what I’m most grateful for.
There are two paths two take with a rare diagnosis, having a positive mindset and be sick or be miserable and sick.
If I could spread a message to other warriors like myself, I would tell them to have that positive mindset, because it makes rare disease more manageable to live with.
Inspire and change lives with your story.