A 28-year-old vegetarian has just months to live after being diagnosed with the human equivalent of “mad cow disease”.
Doctors told Ritchii Kara, 28, of Rye Close, Saltdean, he had variant Creutzfeldt-Jakob Disease (CJD) last August and gave him just 14 months to live.
Mr Kara, who is from Cardiff, said: “I had trouble for quite a long time, going back four years.
“Mydoctors didn’t take it seriously,my headaches and coordination being off balance.
“They just put it down to stress.”
Variant CJD is an incurable disease believed to be caused by exposure to bovine spongiform encephalopathy (BSE) which affects cattle.
It was not until Mr Kara, who has been a vegetarian for the past five years,moved to Brighton two years ago that a doctor referred him to the specialist CJD National Prion Clinic in London where he was diagnosed with variant CJD.
“My memory’s bad and so is my coordination and sometimes I can’t see,” he explained.
“I get hallucinations sometimes, which is part the disease and part the medication.
“I put toothpaste in the fridge once but I have no memory of doing it – it’s kind of like sleep walking.”
Variant CJD is incredibly rare with only 176 deaths in the UK since 1995 but there is no cure.
Mr Kara said it took a long time for him to accept the news and it wasn’t until a month later that he finally told his parents.
He said: “It’s harder for my parents because I think they feel quite powerless.
“They said to me, ‘Oh we want you to move home and look after you’, but I’m just not ready to stop everything yet.
“I think if you’re just going to sit about and be sad, what’s the point in going on anyway?”
A few months ago he was forced to give up his job as a barman at the Queen’s Arms pub, Brighton, where he also performed as a drag queen, due to the illness.
After stumbling a few times behind the bar due to his poor coordination, his friend Mari Ahlfeld- Smith rounded up the troops and moved all of Mr Kara’s belongings into her home where he now lives.
Ms Ahlfeld-Smith, 48, said: “It was just the right thing to do, I couldn’t have stood back and left him – he’s like my son.”
Since his diagnosis, Mr Kara has wasted no time in fulfilling dreams on his “bucket list”, including a holiday to Hong Kong and a trip to for a gay pride festival in Hamburg, Germany, where Danish singer Whigfield, famous for her 90s hit Saturday Night, performed a song he had written.
NowMr Kara is organising a charity event to raise awareness of CJD and money for the National CJD Research and Surveillance Unit in Edinburgh.
The event will take place at the Queen’s Arms in George Street, Brighton, at 4.30pm on Saturday, August 31, and include a performance from many drag queen acts, including Mr Kara’s alter ego Pasty Cline.
Mr Kara added: “People don’t know that CJD exists and this is about doing something positive.
“It’s for the future because they have got to find a cure for it one day and any money we raise is surely going to make a positive difference.”
See the latest news headlines from The Argus:
- Widow’s anguish after grave is vandalised
- Boy joins women-only race for cancer charity
- Second car in police chase hit and run
- Protesters disrupt open day over staff “demotions”
- Killer had taste for blood before terror attack