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Raising awareness to fight the pain of trigeminal neuralgia

Kidsday reporter Kara Gallo with her mom, Kathleen,

Kidsday reporter Kara Gallo with her mom, Kathleen, in their teal ribbon shirts. Credit: Gallo family

Imagine feeling the pain of lightning strike your face. This is what it feels like having a condition called trigeminal neuralgia. My mom, Kathleen, has this. This disease is rare but is described by patients and medical professionals as the most painful condition known to mankind.

I remember when my family and I were driving to Virginia to go on our summer vacation at the end of June in 2013. I was only 5 and was so excited because we have fun there every year. I didn’t realize my mom was in so much pain. She ended up in the hospital most of the trip, but my stepdad, Dave, did his best to give my older brothers (Kevin, Tyler and Quentin) and me the best vacation he could. This was the beginning of her painful journey.

Trigeminal neuralgia is a chronic pain condition of the trigeminal nerve, one of the biggest nerves in the head. This nerve, which is attached to the brain, brings feeling to your scalp, forehead, nose, cheek, jaw, lip, chin, teeth and gums. The condition is usually caused by blood vessels pressing on this nerve, which causes wearing away or damage to the coating around the nerve.

Patients say it feels like a stabbing, shooting, electrical shock-like pain. In the typical form of the disorder, attacks last about 20 seconds to minutes, but the attacks can happen up to 100 times a day. Some describe it as extreme burning, fiery, aching, pulling pain. The pain may be constant (if you have the atypical form). My mom has both forms.

Only 1 in 20,000 people have been diagnosed with this condition. There is not enough being done to help my mom and the other people hurting from this. She has had two brain surgeries already.

There is no cure, but I am trying to spread awareness. Oct. 7 is International Trigeminal Neuralgia Awareness Day, when races and fundraisers are held to raise money for The Facial Pain Research Foundation. To help spread awareness, buildings and bridges all over the world light up in teal, the color of the ribbon for this disorder. We wear our trigeminal neuralgia shirts on Oct. 7. Patchogue-Medford High School, where my mother has taught for a long time, all had teal shirts made that say “Friends of Kathleen” with a teal ribbon, and they wear it every year.

Even though my mom has this disease, she is still the best mom ever. She fights through the pain as much as she can. She tries her best not to let this affect our lives. She is always there when I need her. I look up to my mom and do a lot of things like her. I want to go to the same college as she did and be a teacher just like her when I grow up.

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