Woman left unable to kiss after make-up triggered rare disease
A teenage girl feared she was dying from a brain tumour after triggering a rare condition when she applied makeup to her face.
Mackenzie Lea, 21, from Alberta, Canada, was eventually diagnosed with trigeminal neuralgia - a chronic pain condition that affects the nerve connecting the brain to the face.
She first experienced pains when she was 10 but it eventually stopped and so thought nothing of it.
When she was 12 the condition returned but she mistook it for a migraine.
In July 2013, after applying makeup, the pain became debilitating and she knew it was something more. She feared she was going to die.
Mackenzie said: 'I remember my first facial pain was when I was 10, then it stopped for a while and resumed when I was 12.
'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 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 knocking on death's door.
'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.'
Doctors began a process to trying to rule out what she could be suffering from and put her on a course of drugs, antibiotics and allergy medication.
During another flare, in October 2013, Mackenzie was kept in hospital for a week for brain scans and fluid taken from her spine.
All tests came back negative so Mackenzie was referred to the complex pain clinic.
In April 2014, she discussed previous scans and the medication already tried with her physician.
'I talked with the doctor for a couple of minutes about my scans and he medication I had tried,' she said. 'He decided to do a physical exam and he asked if the pain affects one side, so I said it was mostly on my right side.
'He asked if it would hurt when he touched my face and I said that I'd rather him not touch it because it would hurt. Then he said he knew what I had and asked if I could give him a couple of minutes to do some research.
'When he came back, his face had gone from bright to pale and he said he'd never seen a case in children, but it was trigeminal neuralgia.
'I felt a number of emotions but the main one was relief because all I had wanted was a diagnosis. I told myself that once I had a diagnosis then they could treat me and I'd be fine. I never imagined that modern medicine wouldn't be able to treat something.
'The look on his face was a bit unsettling and I knew he was going to tell me something bad. I was told that it was a form of nerve damage that was very rare, and there wasn't an easy fix.'
She had to be taken off strong medication after breaking out in sores, leaving doctors with no choice but to try complex surgery aimed at easing pressure on the nerves in her head.
She underwent surgery but within three months was back at the Intensive Pain Rehabilitation Program, which involved physical, mental and occupational therapy to cope with her condition.
Her life stopped, forcing her to give up her dreams of studying medicine, as any slight movement or stimulation to her face left her suffering for days.
Despite this, Mackenzie said she is thankful her boyfriend Jon knew her before the illness took hold, and before she was housebound, although the condition makes it painful to kiss.
Mackenzie turned 18 in February 2016 and was transferred to an adult neurologist who took a different approach including Botox, blocks and infusions.
She underwent second nerve surgery in July this year which has left her with far less intensive or frequent pain than before.
'I do have flare-ups now and then but it's not progressing,' she added. 'Before, I was planning on going to med school and I was a dancer too but all of that stopped.
'The side effects from medication and the pain itself make 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 my at my full capacity. He's seen what I'm capable of, in both an able and disabled body.
'One of the hardest things is feeling like a burden as he's young and able and I worry about holding him back. It also sometimes hurts to kiss him, which can be really frustrating for us.
'Even if someone isn't dealing with this disease specifically, everyone has their own burdens to carry. I'd love to show people that being dealt a bad hand doesn't mean you can't have a fulfilling life.'
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