April is MOGAD Awareness Month!
Tomorrow marks the beginning of MOG Antibody Disease Awareness Month! Throughout the month of April, we will highlight members of our community who have been diagnosed with MOGAD, share information about the disorder, and we invite you to a MOGAD Awareness Virtual Event. It is important to spread awareness of MOGAD to help lead to faster diagnoses, more effective therapies, and better understanding.
MOGAD is a recently coined neuro-inflammatory condition that preferentially causes inflammation in the optic nerve but can also cause inflammation in the spinal cord and brain. Myelin oligodendrocyte glycoprotein (MOG) is a protein that is located on the surface of myelin sheaths in the central nervous system. While the function of this glycoprotein is not exactly known, MOG is a target of the immune system in this disease. The diagnosis is confirmed when MOG antibodies in the blood are found in patients who have repeated inflammatory attacks of the central nervous system. You can learn more about MOGAD by visiting our information page and our Resource Library.
We asked members of our community who have been diagnosed with MOGAD to share how their diagnosis has impacted them, what challenges they have faced, and how they feel encouraged or supported. You can read some of their responses below.
“Luke has severe cognitive dysfunction and fatigue from his multiple relapses, and this makes schoolwork and learning really difficult for him. Despite these obstacles, he has learned how strong and courageous he is and that he can handle anything that comes his way! He has his family and a whole community of people cheering him on and supporting him! He is so loved! He finds inspiration from accomplishing things that are hard, but he overcomes them anyways! Luke never gives up and will always fight MOGAD!!
MOGAD is a chronic illness with many challenges, but with the right research and support, all who have it can still thrive!”
– Caitlyn Rester, mother of Luke
“Life in general is difficult, everyday simple things aren’t so simple and trying to get people to understand seems impossible. My parents have supported me the most. The biggest challenge I face is daily life and knowing the future, since I can’t plan anything because I don’t know how I will feel.”
– Tom Beaulieu
“My daughter was diagnosed at age 3, she is now 6 and healthy. With MOG being so new, we went to more doctors’ appointments than we can even begin to count before she was hospitalized for a week. She had a spinal tap, multiple MRIs, and multiple blood draws, along with being on a high dose of steroids due to an eye turn. It has been difficult not knowing too much about it and whether it will come back.”
– Sierra Nelson
Get involved in MOGAD Awareness Month by following us on Facebook, Instagram, and Twitter. Share our posts with family and friends to help spread information and stories! You can also get involved by sharing your own story through our This is Me campaign. By working together as a community, we can bring awareness to MOGAD and improve the lives of those who have been diagnosed with this disorder.
