AMHERST – Anne MacAloney learned something important when she came forward to speak about her illness three months ago. She’s not alone – not even locally.
A story published in the Oct. 4 issue of the Amherst News detailed MacAloney’s struggle with trigeminal neuralgia, a rare chronic pain condition she has been battling since 1997. Since that story appeared (in promotion of the first International Trigeminal Awareness Day on Oct. 7), MacAloney has been approached by several others in Cumberland County suffering from the same condition.
She has had people contact her from right here in Amherst, as well as the River Hebert area, Sackville, N.B., and as far away as Moncton and Halifax.
“None of us knew any of the others existed,” she explained. “A doctor is not allowed to say, ‘Oh yes, this person has had it too and I’ve been treating them.’ But seeing that in the paper made quite a difference.”
Described by some as “one of the most painful conditions seen in medicine,” trigeminal neuralgia is a neuropathic disorder characterized by periods of intense pain in the face. MacAloney had never known anyone else in this area with it.
Now that they have been in touch with each other, she said they have created a local trigeminal neuralgia support group, and plan to meet regularly once the weather becomes more favourable.
“We tend to isolate ourselves anyway, because we don’t like to go out in the weather,” she said, explaining that weather conditions like light, wind and temperature changes can trigger the pain. “So we don’t go out a lot, and we lose ties with friends, even family.”
She also is involved with two online support groups on Facebook.
The benefits of support include the opportunity to share information about treatments and therapies, and just to know you’re not alone.
“Once I knew there were more people out there, it kind of made it a real thing,” said MacAloney. “It made me realize I wasn’t going crazy, all of a sudden.”