Today marks the beginning of Acute Disseminated Encephalomyelitis (ADEM) Awareness Month! Throughout the month of May, we will highlight members of our community who have been diagnosed with ADEM, share information about the disorder, and invite you to an ADEM Awareness Virtual Event. It is important to spread awareness of ADEM to help lead to faster diagnoses, more effective therapies, and better understanding.
ADEM is a rare inflammatory demyelinating disease of the central nervous system. ADEM is thought to be an autoimmune disorder in which the body’s immune system mistakenly attacks its own brain tissue, triggered by an environmental stimulus in genetically susceptible individuals. In most cases, ADEM is believed to be triggered by a response to an infection, or much less likely, to a vaccination. For this reason, ADEM has sometimes been referred to as post-infectious or post-immunization acute disseminated encephalomyelitis. You can learn more about ADEM by visiting our information page and our Resource Library.
Below are some quotes from some of our Hope Ambassadors who have been diagnosed with ADEM. You can read their full stories on our Hope Ambassadors page.
“Every day, I feel incredibly grateful to be surrounded by unimaginably bright, supportive, and inspiring people who believe in my potential to become a doctor. They are my family away from home. There aren’t enough words to express how grateful I am for everyone and everything that has happened to get me to where I am today. The most difficult part about living with a rare neuroimmune disorder for me is its invisibility.”
– Huy Tran
“To date, Victoria has had over six surgeries, and counting, and is doing amazingly well. She has been fortunate enough to keep up with her peers academically and continues to overcome all obstacles. She has defeated all odds, and as her parents, we couldn’t be prouder!”
– Pimbii Kaura, Victoria’s mom
“I’ve always worked hard, and I am a competitor. I will never give up. This last spring I rode a bike for the first time in nine years. On a tandem bike with my fitness trainer, Emily from Turnstone, we rode 10 miles. I’m not swimming yet, but I love going to the beach. Miles and I are still avid sports fans; even if we are sometimes rooting for different teams. I’ve been able to meet with St. Mary’s and Notre Dame classmates at ND football games. I even got a pre-game tour of the ND locker room. I’ve been a bridesmaid in a high school friend’s wedding.”
– Ashley Harrington
Get involved in ADEM 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 ADEM and improve the lives of those who have been diagnosed with this disorder.