The ArgusDoctors tell 28-year-old Saltdean vegetarian he has just months to live after contracting CJD (From The Argus)

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Doctors tell 28-year-old Saltdean vegetarian he has just months to live after contracting CJD

The Argus: Doctors tell 28-year-old Saltdean vegetarian he has just months to live after contracting CJD Doctors tell 28-year-old Saltdean vegetarian he has just months to live after contracting CJD

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.”

The Argus:

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.”

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Comments (17)

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8:46am Fri 23 Aug 13

monkeymoo says...

Why does it even mention he is a vegetarian?

Totally misleading, as he ate meat up until five years ago. His symptoms started (including the incubation period) before this.

Even so....I hope he has a happy and fulfilling time with his life.
Why does it even mention he is a vegetarian? Totally misleading, as he ate meat up until five years ago. His symptoms started (including the incubation period) before this. Even so....I hope he has a happy and fulfilling time with his life. monkeymoo
  • Score: 47

9:21am Fri 23 Aug 13

The Baron Pepperpot says...

I wish you all the best, Ritchii
I wish you all the best, Ritchii The Baron Pepperpot
  • Score: 47

10:13am Fri 23 Aug 13

KarenT says...

You are an inspiration! I wish all the best.
You are an inspiration! I wish all the best. KarenT
  • Score: 32

12:54pm Fri 23 Aug 13

Poem58 says...

So sorry to hear of this Ritchii.... but you are 100% correct. Time to enjoy yourself traveling with your friends.

Hong Kong is a great choice, what a place it is.... but avoid the glitzy tourist areas with their casinos, posh restaurants and the like.... head for local scenes like Sham Shui Po district.

I had the GREATEST meal of my life in a street cafe in a huge market here.... plates and plates of fabulous vegetarian food and constant supply of ice cold bottles of Chinese beer.

And don't pay the asking price for anything... the stall proprietor will often chase you down the road halving the price with every step.

Have a simply fab time there.
So sorry to hear of this Ritchii.... but you are 100% correct. Time to enjoy yourself traveling with your friends. Hong Kong is a great choice, what a place it is.... but avoid the glitzy tourist areas with their casinos, posh restaurants and the like.... head for local scenes like Sham Shui Po district. I had the GREATEST meal of my life in a street cafe in a huge market here.... plates and plates of fabulous vegetarian food and constant supply of ice cold bottles of Chinese beer. And don't pay the asking price for anything... the stall proprietor will often chase you down the road halving the price with every step. Have a simply fab time there. Poem58
  • Score: 23

1:30pm Fri 23 Aug 13

Poem58 says...

mustaphaLeeko wrote:
A very nice guy and such a shame.

On another point, I wonder if our local MP will have the gumption to show her support by going to the charity event he is planning, but probably not "time commitments blah blah blah" or more likely as he's local and not from Balcombe, or Palestinian!

Hope his remaining time is enjoyable!
Pathetic.... an appalling post attempting to score political points out of this chaps story of braveness and heroism in the face of adversity.

mustaphaLeeko - you should hang your head in shame and engage your brain before you let rip with the all too predictable vitriol. We've heard it all before... give it a rest whydoncha.
[quote][p][bold]mustaphaLeeko[/bold] wrote: A very nice guy and such a shame. On another point, I wonder if our local MP will have the gumption to show her support by going to the charity event he is planning, but probably not "time commitments blah blah blah" or more likely as he's local and not from Balcombe, or Palestinian! Hope his remaining time is enjoyable![/p][/quote]Pathetic.... an appalling post attempting to score political points out of this chaps story of braveness and heroism in the face of adversity. mustaphaLeeko - you should hang your head in shame and engage your brain before you let rip with the all too predictable vitriol. We've heard it all before... give it a rest whydoncha. Poem58
  • Score: 20

2:50pm Fri 23 Aug 13

monkeymoo says...

mustaphaLeeko wrote:
A very nice guy and such a shame.

On another point, I wonder if our local MP will have the gumption to show her support by going to the charity event he is planning, but probably not "time commitments blah blah blah" or more likely as he's local and not from Balcombe, or Palestinian!

Hope his remaining time is enjoyable!
Idiot.
[quote][p][bold]mustaphaLeeko[/bold] wrote: A very nice guy and such a shame. On another point, I wonder if our local MP will have the gumption to show her support by going to the charity event he is planning, but probably not "time commitments blah blah blah" or more likely as he's local and not from Balcombe, or Palestinian! Hope his remaining time is enjoyable![/p][/quote]Idiot. monkeymoo
  • Score: 16

4:45pm Fri 23 Aug 13

stephanie starlet says...

Those who know Ritchi will know he is one of the friendliest sweetest most genuine lads on the Brighton scene . His Welsh earthiness is a delight and he always has a smile and time for everyone One of Brightons most colorful wonderful characters It is therefore all the more agonizing to read of his pain and struggles with his health He is truly brave for putting this out there and confronting his fears in order to help others . And to add incite to other comments here you don't have to eat '' loads of meat ' to get cjd that is a misinformed and stupid statement In fact sweets like Haribos jelly babies and the like containe bovine gelatin !! Clearly awareness of this disease and the facts surrounding it still need much work , and the benefit gig that Ritchi has organised at the Queens Arms on George Street will no doubt raise much needed funds Ritchi is to be admired and respected cos of all the time I have known him I have not once hear him complain or grumble about anything He is an inspiration and very brave Big Love to Him !!! x x Stephanie Starlet
Those who know Ritchi will know he is one of the friendliest sweetest most genuine lads on the Brighton scene . His Welsh earthiness is a delight and he always has a smile and time for everyone One of Brightons most colorful wonderful characters It is therefore all the more agonizing to read of his pain and struggles with his health He is truly brave for putting this out there and confronting his fears in order to help others . And to add incite to other comments here you don't have to eat '' loads of meat ' to get cjd that is a misinformed and stupid statement In fact sweets like Haribos jelly babies and the like containe bovine gelatin !! Clearly awareness of this disease and the facts surrounding it still need much work , and the benefit gig that Ritchi has organised at the Queens Arms on George Street will no doubt raise much needed funds Ritchi is to be admired and respected cos of all the time I have known him I have not once hear him complain or grumble about anything He is an inspiration and very brave Big Love to Him !!! x x Stephanie Starlet stephanie starlet
  • Score: 35

5:20pm Fri 23 Aug 13

Shelina says...

This is very sad and my heart goes out to Ritchi, he should never have been exposed to BSE in the first place. I have read about people with vCJD including Andrew Black aged 24 , his mother has set up a website justiceforandy.com or justice4andy.com also there is a CJD awareness site on facebook with over 400 members supporting each other.
Much information is on Youtube for anyone who misunderstands vCJD and how it is transmitted.
This is very sad and my heart goes out to Ritchi, he should never have been exposed to BSE in the first place. I have read about people with vCJD including Andrew Black aged 24 , his mother has set up a website justiceforandy.com or justice4andy.com also there is a CJD awareness site on facebook with over 400 members supporting each other. Much information is on Youtube for anyone who misunderstands vCJD and how it is transmitted. Shelina
  • Score: 18

6:25pm Fri 23 Aug 13

chrismilo says...

I hope the medical board tell that doctor his days are numbered, As a doctor
I hope the medical board tell that doctor his days are numbered, As a doctor chrismilo
  • Score: -7

6:57pm Fri 23 Aug 13

The Baron Pepperpot says...

stephanie starlet wrote:
Those who know Ritchi will know he is one of the friendliest sweetest most genuine lads on the Brighton scene . His Welsh earthiness is a delight and he always has a smile and time for everyone One of Brightons most colorful wonderful characters It is therefore all the more agonizing to read of his pain and struggles with his health He is truly brave for putting this out there and confronting his fears in order to help others . And to add incite to other comments here you don't have to eat '' loads of meat ' to get cjd that is a misinformed and stupid statement In fact sweets like Haribos jelly babies and the like containe bovine gelatin !! Clearly awareness of this disease and the facts surrounding it still need much work , and the benefit gig that Ritchi has organised at the Queens Arms on George Street will no doubt raise much needed funds Ritchi is to be admired and respected cos of all the time I have known him I have not once hear him complain or grumble about anything He is an inspiration and very brave Big Love to Him !!! x x Stephanie Starlet
*Like*
[quote][p][bold]stephanie starlet[/bold] wrote: Those who know Ritchi will know he is one of the friendliest sweetest most genuine lads on the Brighton scene . His Welsh earthiness is a delight and he always has a smile and time for everyone One of Brightons most colorful wonderful characters It is therefore all the more agonizing to read of his pain and struggles with his health He is truly brave for putting this out there and confronting his fears in order to help others . And to add incite to other comments here you don't have to eat '' loads of meat ' to get cjd that is a misinformed and stupid statement In fact sweets like Haribos jelly babies and the like containe bovine gelatin !! Clearly awareness of this disease and the facts surrounding it still need much work , and the benefit gig that Ritchi has organised at the Queens Arms on George Street will no doubt raise much needed funds Ritchi is to be admired and respected cos of all the time I have known him I have not once hear him complain or grumble about anything He is an inspiration and very brave Big Love to Him !!! x x Stephanie Starlet[/p][/quote]*Like* The Baron Pepperpot
  • Score: 7

3:07pm Sat 24 Aug 13

Farouche says...

A really sad story-struck down in his prime.
A really sad story-struck down in his prime. Farouche
  • Score: -1

9:39pm Sat 24 Aug 13

Shelina says...

It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001'
Ritchii was just a baby in 1985 when the BSE scandal hit the headlines.
How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion?
Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas.
There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery.
It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001' Ritchii was just a baby in 1985 when the BSE scandal hit the headlines. How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion? Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas. There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery. Shelina
  • Score: 5

7:03pm Sun 25 Aug 13

mimseycal says...

Pompey Maximus wrote:
Shelina wrote:
It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001'
Ritchii was just a baby in 1985 when the BSE scandal hit the headlines.
How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion?
Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas.
There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery.
Two cases in the UK last year...both were immigrants...So perhaps Ritchies partners should get tested....ASAP!
CJD occurs in the following manner:
Spontaneously: Classic CJD will develop for no apparent reason. This is actually the majority of cases; generally referred to as sCJD. Normally, sCJD affects people over 40 years of age.
By genetic mutation: A small percentage of people (5-10%) with the disease will have a family history of the disease or test positive for a genetic mutation associated with CJD. This type is referred to as familial or fCJD.
Latrogenic CJD: Where medical procedures are causal. A small number of people have developed the disease after being exposed to infected human tissue during certain medical procedure, such as a cornea or skin transplant, or grafts of dura mater, the membrane that covers the brain.

The risk of being contaminated with CJD-related infectious proteins is low. CJD cannot be transmitted through coughing or sneezing, casual contact, such as touching, or even through sexual contact.

But carry on scaremongering. It is so much easier then actually investigating the facts ...
[quote][p][bold]Pompey Maximus[/bold] wrote: [quote][p][bold]Shelina[/bold] wrote: It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001' Ritchii was just a baby in 1985 when the BSE scandal hit the headlines. How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion? Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas. There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery.[/p][/quote]Two cases in the UK last year...both were immigrants...So perhaps Ritchies partners should get tested....ASAP![/p][/quote]CJD occurs in the following manner: Spontaneously: Classic CJD will develop for no apparent reason. This is actually the majority of cases; generally referred to as sCJD. Normally, sCJD affects people over 40 years of age. By genetic mutation: A small percentage of people (5-10%) with the disease will have a family history of the disease or test positive for a genetic mutation associated with CJD. This type is referred to as familial or fCJD. Latrogenic CJD: Where medical procedures are causal. A small number of people have developed the disease after being exposed to infected human tissue during certain medical procedure, such as a cornea or skin transplant, or grafts of dura mater, the membrane that covers the brain. The risk of being contaminated with CJD-related infectious proteins is low. CJD cannot be transmitted through coughing or sneezing, casual contact, such as touching, or even through sexual contact. But carry on scaremongering. It is so much easier then actually investigating the facts ... mimseycal
  • Score: 8

8:02pm Sun 25 Aug 13

mimseycal says...

Barney Collier wrote:
mimseycal wrote:
Pompey Maximus wrote:
Shelina wrote:
It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001'
Ritchii was just a baby in 1985 when the BSE scandal hit the headlines.
How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion?
Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas.
There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery.
Two cases in the UK last year...both were immigrants...So perhaps Ritchies partners should get tested....ASAP!
CJD occurs in the following manner:
Spontaneously: Classic CJD will develop for no apparent reason. This is actually the majority of cases; generally referred to as sCJD. Normally, sCJD affects people over 40 years of age.
By genetic mutation: A small percentage of people (5-10%) with the disease will have a family history of the disease or test positive for a genetic mutation associated with CJD. This type is referred to as familial or fCJD.
Latrogenic CJD: Where medical procedures are causal. A small number of people have developed the disease after being exposed to infected human tissue during certain medical procedure, such as a cornea or skin transplant, or grafts of dura mater, the membrane that covers the brain.

The risk of being contaminated with CJD-related infectious proteins is low. CJD cannot be transmitted through coughing or sneezing, casual contact, such as touching, or even through sexual contact.

But carry on scaremongering. It is so much easier then actually investigating the facts ...
I think Pompey was suggesting they get tested for another sort of disease prevalent in Brighton....
Foot in Mouth? Now there is an infectious disease if ever I saw one. No sooner do you see one comment by an infected individual on these comment threads and a whole load of others jump on the bandwagon. All eager to show themselves as utterly devoid of human decency with the cognitive capacity of a protozoan and a sense of humour distinct only by its utter failure to manifest itself.
[quote][p][bold]Barney Collier[/bold] wrote: [quote][p][bold]mimseycal[/bold] wrote: [quote][p][bold]Pompey Maximus[/bold] wrote: [quote][p][bold]Shelina[/bold] wrote: It is well documented that up to 60 million UK citizens have been exposed to BSE. 'Guardian 2001' Ritchii was just a baby in 1985 when the BSE scandal hit the headlines. How did he get vCJD? was it through contaminated vaccines, beef, baby food, gelatine, blood transfusion? Today those of us deemed to have been exposed to BSE are banned from donating our blood overseas. There is a vCJD blood test available at the National Prion Clinic in London developed by Prof.John Collinge this blood test is not available at your GP surgery.[/p][/quote]Two cases in the UK last year...both were immigrants...So perhaps Ritchies partners should get tested....ASAP![/p][/quote]CJD occurs in the following manner: Spontaneously: Classic CJD will develop for no apparent reason. This is actually the majority of cases; generally referred to as sCJD. Normally, sCJD affects people over 40 years of age. By genetic mutation: A small percentage of people (5-10%) with the disease will have a family history of the disease or test positive for a genetic mutation associated with CJD. This type is referred to as familial or fCJD. Latrogenic CJD: Where medical procedures are causal. A small number of people have developed the disease after being exposed to infected human tissue during certain medical procedure, such as a cornea or skin transplant, or grafts of dura mater, the membrane that covers the brain. The risk of being contaminated with CJD-related infectious proteins is low. CJD cannot be transmitted through coughing or sneezing, casual contact, such as touching, or even through sexual contact. But carry on scaremongering. It is so much easier then actually investigating the facts ...[/p][/quote]I think Pompey was suggesting they get tested for another sort of disease prevalent in Brighton....[/p][/quote]Foot in Mouth? Now there is an infectious disease if ever I saw one. No sooner do you see one comment by an infected individual on these comment threads and a whole load of others jump on the bandwagon. All eager to show themselves as utterly devoid of human decency with the cognitive capacity of a protozoan and a sense of humour distinct only by its utter failure to manifest itself. mimseycal
  • Score: 1

1:11am Tue 27 Aug 13

metamorphosis says...

Such a terrible illness...
Death comes too easily to those who grasp it
In paradise.... we lose our grip
Such a terrible illness... Death comes too easily to those who grasp it In paradise.... we lose our grip metamorphosis
  • Score: -6

3:20pm Fri 30 Aug 13

Scorpio50 says...

Whilst this is very sad I wonder why they mention that he's a Vegetarian? The headline on a bill board outside a Newsagent proclaimed, in bold writing, 'Vegetarian contracts CJD'. Upon closer inspection you read he's only been a Vegetarian for 5 years and of course the mis-feeding of cows has been going on for longer then that.
Whilst this is very sad I wonder why they mention that he's a Vegetarian? The headline on a bill board outside a Newsagent proclaimed, in bold writing, 'Vegetarian contracts CJD'. Upon closer inspection you read he's only been a Vegetarian for 5 years and of course the mis-feeding of cows has been going on for longer then that. Scorpio50
  • Score: 3

7:36pm Fri 20 Sep 13

Farouche says...

Is he still with us?
Is he still with us? Farouche
  • Score: -6

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