Rare nerve disease leaves woman unable to kiss boyfriend

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Mackenzie Lea and boyfriend. (Photo: MEDIA DRUM WORLD/MAGAZINEFEATURES.CO.ZA)
Mackenzie Lea and boyfriend. (Photo: MEDIA DRUM WORLD/MAGAZINEFEATURES.CO.ZA)

A Canadian woman who’s been was diagnosed with a rare nerve condition that causes severe pain, has been left bedbound and unable to kiss her boyfriend.

Mackenzie Lea (21) started experiencing inconsistent pain on the side of her face when she was 10 years old. It stopped after a while and returned when she was 12 so she dismissed it as a migraine.

“I attributed the pain to migraines, but the pain became debilitating when I was 15 and I knew it wasn’t just migraines anymore.

“I was putting makeup on so touching my face when the pain was triggered. I was terrified and I had no idea what was happening.”

“I thought I had a brain tumour and that I was dying because I didn’t think that such a level of pain was possible without me knocking on death’s door,” she recalls.

The young woman went to see her doctor, who admitted he had no idea what the problem was. Mackenzie was then prescribed migraine medication, antibiotics and allergy medication.

A few months later, in October 2013, a flare-up occurred and Mackenzie was kept in hospital for a week to be monitored. Doctors performed blood tests, a CT scan, an MRI scan and a lumbar puncture.

But all of the tests and scans came back negative and Mackenzie was then referred to the complex pain clinic.

She was seen at the clinic in April 2014 and Mackenzie recalls the doctor turning pale and asking if he could have a couple of minutes to discuss her case with his colleagues before confirming the diagnosis.

Mackenzie was diagnosed with Trigeminal Neuralgia (TN), a rare form of nerve damage whereby even the faintest of facial stimulation, such as brushing teeth, eating, talking and kissing, can cause excruciating pain.

Mackenzie tried numerous medications and in March 2015 she underwent microvascular decompression surgery to relieve the pressure on her brain in the hopes that it would reduce the pain.

The surgery appeared to have been a success until three months later when she her condition exacerbated and she had to be admitted to the ICU.

As the pain returned, Mackenzie had to undergo physical, mental and occupational therapy to cope with TN.

The disease has halted Mackenzie’s life as she’s had to give up on her dreams of studying medicine because any slight movement or stimulation to her face leaves her in crippling pain for days.

Mackenzie Lea

Despite this, Mackenzie is thankful that her boyfriend, Jon, knew her before the illness took hold of her. He saw her before it left her housebound. She does admit that her condition can make it painful to kiss each other.

“Before, I was planning on going to med school and I was a dancer too but all of that stopped,” Mackenzie says.

“The side effects from medication and the pain itself makes it too hard to focus and learn. I can barely move without being overwhelmed by pain, so working isn’t an option. There are things I wanted in the future, like having children, which may not be possible anymore.

“I feel lucky that my boyfriend knew me before my illness and he got to see me at my full capacity. He’s seen what I’m capable of in both an able and disabled body,” she says.

“One of the hardest things is feeling like a burden as he’s young and I worry about holding him back. It also sometimes hurts to kiss him, which can be really frustrating for us.

“But I’d love to show people that being dealt a bad hand doesn’t mean you can’t have a fulfilling life.”

Source: Magazine Features

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