Oh, Charlotte, If Only You Had A Different Issue...

Weighing six stone and on the brink of organ failure, Charlotte Chapman-Hart is admitted to hospital in excruciating pain. It's assumed the former model and dancer has an eating disorder. But Charlotte, who repeatedly denies she's starving herself, has a rare disease. She's been prescribed a new pain relief medication, which should have been monitored by her GP and wasn't. A side effect is rapid weight loss - but it's been overlooked by those treating her. Charlotte's experience over the next three months would leave her adding post-traumatic stress disorder (PTSD) to the list of her symptoms. She now fears the care that she needs to stay alive.

Charlotte is unlucky enough to have a genuine issue, and not the type of mental illness that doctors would be falling over each other to verify and agree with… 

"I think the hardest thing I've ever had to face is trying to convince people that I am of sound mind, and that what I'm telling you is the absolute truth," says Charlotte, sitting in the garden of her home in Cuckney in Nottinghamshire. "I told them that I've never had an issue with eating. I'm just not hungry. Things don't taste the same. "But rather than think differently, I was put into a diagnosis box that was wrong."

It’s a pretty common thing that doctors don’t believe patients, except of course for those who are flavour of the month. If she'd simply told doctors she was really a man, they'd have had no hesitation believing her.  

At the age of 21, in 2014, Charlotte was diagnosed with chiari malformation type 1 - a condition in which part of the brain pushes down into the spinal canal - and syringomyelia, a rare neurological disorder.

And now she’s turning it into a crusade:  

This year, Charlotte became an ambassador for the charity Medics4RareDiseases, and is helping to raise awareness among health professionals."What people are asking for over and over again is to be listened to, is to be believed, is to be involved in their healthcare," says Dr McKay. "If technology, fast diagnosis and treatment alone were going to improve the lives of people with rare conditions, then we would already be fine." According to Medics4RareDisease, more than 3.5 million people in the UK live with rare conditions and often face the burden of constantly explaining themselves.

Just like people with non-rare diseases. It’s just what the NHS does.