Battling rare disease a daily reality for trigeminal neuralgia sufferer Emelye Lovell

Battling rare disease a daily reality for trigeminal neuralgia sufferer Emelye Lovell

IMAGINE  feeling that you were being stabbed with knives or repeatedly struck by lightning — and there was nothing you could do about it.

For Glen Iris woman Emelye Lovell, 25, this is a reality.

The young director of Bellman graphic design in Hawthorn suffers from the little-known chronic pain condition trigeminal neuralgia (TN), which is where the fifth cranial nerve connected to the brain is damaged.

The condition causes sudden, excruciating pain across the face that can be physically and mentally ­incapacitating.

“For me the worst part of TN is that you live. It feels like it should be fatal,” Ms Lovell said.

With beauty, brains and her own business, the softly spoken young woman appears to have the world at her feet.

But she lives in fear of an “attack” that will leave her clutching her face in agony, especially in social situations with people who do not know about her condition.

Ms Lovell said many people with TN found it incredibly difficult to cope with.

“You look perfectly fine but (sufferers) feel like their face is broken,” she said.

Medication for the condition was available but it tended to have ­negative side effects that ­impaired cognitive function and memory.

Surgical options were also hit-and-miss and so far unsuccessful for Ms Lovell, who visited 18 allied health professionals before she was finally diagnosed with TN.

With a diagnosis, she was finally able to meet other people like her and began attending a support group in Ringwood.

She now leads the group and said it was a bittersweet moment when new members arrived and met other people with the condition.

“It can take years (to get diagnosed) and a lot of damage can be done to their psyche in that time,” she said.

“I would like to create more media around the different conditions (and) symptoms and help people get diagnosed sooner.”

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