By Patrick, The MOG Project Youth Champion
Patrick is 16, a high school junior and one of The MOG Project’s Youth Champions. He was diagnosed with myelin oligodendrocyte glycoprotein antibody disease (MOGAD) in 2020. In his own words, he shares what life is like as a teen living with MOGAD, and why staying positive has made all the difference.
How my journey with MOGAD began
Hello, my name is Patrick. I am 16 years old and a junior in high school. I was first diagnosed with MOGAD in May of 2020, after experiencing symptoms that started in March of 2020.
My journey with MOGAD began when I suffered a concussion during a game of kickball. That night, I was taken to the hospital in an ambulance, and I was later moved to Children’s Hospital of Philadelphia. I was sent home the following day, but began suffering from extreme migraines and vomiting, and I lost 20% of my body weight. I have faint memories of being in bed, watching Spider-Man, and I didn’t know what the future held.
For the next few months, I was in and out of the hospital, where we were told multiple things from different doctors. After many trips to the hospital for MRIs and other tests, I was finally diagnosed with MOGAD. At the time, I had no clue what this meant for me, as it is almost an unknown disease.
Relapses and finding the right treatment
A few months after the hospital, I had a relapse. I have undergone monthly treatment of IVIG infusions. Over the last few years, we have attempted to wean off of IVIG, but each time a relapse occurs. During these relapses, my vision dims and there are areas in my vision that no longer appear. Luckily, the IVIG treatment works every time to help my eyesight return to normal.
Doctors have attempted to put me on new treatments, which may be easier, but none have worked for me. I am still receiving the IVIG treatment to this day and have stayed completely healthy.
Staying positive and looking at the bright side in all of this has been extremely helpful.
Luckily, with help from my family and medical team, I have been able to continue living a normal life. I am able to play sports for school and have fun with my friends. I have experienced no major differences in my life since diagnosis. I am incredibly thankful that I am able to continue to do what I want with nothing holding me back.
Why I stay positive
There have definitely been bumps in the road, but staying positive and looking at the bright side in all of this has been extremely helpful. It would have been easy to sit around and feel bad for myself and look at all the hard times, but staying positive helped me get through all of this.
I currently have full faith in my medical team and trust their judgment. I am not worried at all about what the future holds, because I know I am in the best hands.
Join Patrick as a youth champion
Patrick is a Youth Champion in The MOG Project’s Youth Engagement Program. Youth Champions are ages 12 and up. They learn what it means to be a MOGADvocate, join a monthly call and take on one fundraising or awareness project each year.
