Raising Awareness for a Rare Disease

Have you ever heard of Trigeminal Neuralgia? Most likely, you have not. It is a debilitating, progressive, and incurable disease that causes extreme, sudden pain to the face. And we want to do our part to raise awareness.

Amanda Young will never forget the day. While teaching an aerobics class, she felt an excruciating electric shock to her face, which stopped her in her tracks.

“I thought my microphone had shorted,” says Amanda. “But, after I took off my headset, the pain never stopped.”

After several months of neurology appointments – complete with bloodwork, MRIs, scans, and more tests – Amanda was diagnosed with TN, a disorder she had never heard of before.

As a licensed Zumba® Instructor, Amanda is using her platform to raise awareness about TN, as it is often hard to diagnose because it is so rare and unknown. Through her Face the Change campaign, she aims to educate others about the disease and living with chronic pain. At her 1st Annual Fitness Fundraiser this past October, she raised over $23,000 towards the Facial Pain Research Foundation, which is fighting to find a cure.

“My message is simple,” says Amanda. “I want others know they are not alone, and that anyone can live a fulfilling life no matter what obstacles they face.”

Watch to learn more about Amanda and her story. 

If you have a story to tell and would like to be featured, please share it at zumbastories.com.

comments