A mum who blacked out on a flight to Barcelona woke up in Paris and was later diagnosed with a condition that affects just 100 people worldwide.
Nia Jones, 42, from Ruthin, Denbighshire, had only returned home from a whirlwind trip to Paris with her daughter the day before she set off for a quick city break to Barcelona. But just after take-off, she collapsed.
“A mum who collapsed on a flight to Barcelona was diagnosed with an ultra-rare condition affecting just 100 people worldwide.”
“Everything went black,” she said. “When I woke up, I was lying in the middle of the plane aisle with a thumping headache. Blurry faces came into view and a woman said gently that I was in Paris. I asked where my daughter was, as I thought coming home from there was all a dream. But then my partner, Bryn, came next to me and said I was safe.”
Nia had suddenly fallen off her seat when her body began jerking. She briefly turned blue. The plane made an emergency landing in Paris so she could be taken for further tests. After multiple brain scans, nothing untoward was found. She returned to the UK via the Eurostar and was referred to a neurologist. It was expected to be a “one-off”.
Six months later, it happened again. “I had to give up my driving license in case it happened again. It was so stressful,” she said. “Six months later, I blacked out again at home. In hospital, I was diagnosed with epilepsy, but my blood tests revealed my calcium levels were abnormally high.”
Nia was diagnosed with multiple endocrine neoplasia type four, a rare genetic disorder of which there are less than 100 confirmed cases worldwide. It causes mutations in the tumour suppressor gene and places sufferers at high risk of developing tumours in the endocrine organs, such as the thyroid, pancreas and ovaries.
“I was speechless,” she said. “The consultant didn’t know if it had caused my epilepsy, but my high calcium levels could cause seizures.”
She had an operation to remove three parathyroid glands to regulate her levels. Since then, Nia hasn’t suffered a single seizure and has been able to get her driving licence back.
“I have regular scans to check for tumours – but I’m doing well,” she added. “I want to speak out about my condition, as it’s so rare. People could be living with it without knowing. I’m proof that with the right treatment, there is chance to live a normal life.”