• News
  • Film and TV
  • Music
  • Tech
  • Features
  • Celebrity
  • Politics
  • Weird
  • Community
  • Advertise
  • Terms
  • Privacy & Cookies
  • LADbible Group
  • LADbible
  • SPORTbible
  • GAMINGbible
  • Tyla
  • UNILAD Tech
  • FOODbible
  • License Our Content
  • About Us & Contact
  • Jobs
  • Latest
  • Topics A-Z
  • Authors
Facebook
Instagram
X
Threads
TikTok
YouTube
Submit Your Content
Patient describes life with ultra-rare incurable disease that people call 'their worst nightmare'

Home> News> Health

Published 15:03 21 Jun 2024 GMT+1

Patient describes life with ultra-rare incurable disease that people call 'their worst nightmare'

The deadly condition affects a small number of people

Kit Roberts

Kit Roberts

A person has described what it is like to live with an incurable and deadly condition, which has been described as people's 'worst nightmare'.

The condition is part of a group known as 'prion' diseases, an extremely weird and unpleasant set of conditions.

Characteristics of prion diseases include that they are progressive, meaning they get worse over time, they are incurable, and they are fatal.

Advert

So a prion disease is really not a condition that you would want to have.

There are many ways you can get one, such as consuming infected flesh, coming into contact with an infected fluid, or in the case of this one in particular, having at least one parent with the genetic predisposition to it.

The condition is a form of insomnia. (Andrii Lysenko / Getty)
The condition is a form of insomnia. (Andrii Lysenko / Getty)

In fact, the condition is a type of insomnia. But we're not talking your regular garden variety insomnia here, this is far more serious.

Advert

The condition is called 'Fatal Familial Insomnia' or FFI, and unlike other kinds of insomnia there is no cure.

Not only that, but your body finds it simply impossible to sleep no matter how exhausted you become.

Once the condition begins to manifest, you effectively stay awake permanently, until eventually you die from symptoms brought on by exhaustion and sleep deprivation.

This occurs in a number of different stages, beginning with the first stage of around four months that includes insomnia that results in paranoia, panic attacks, and phobias

Advert

The second stage lasts about five months, and includes hallucinations and panic attacks.

This is followed by a stage lasting for roughly three months in which the patient starts rapidly losing weight.

Finally, the patient develops dementia before becoming completely unresponsive.

This final stage lasts for around six months before the patient's death.

Advert

The condition is terminal. (Yoss Sabalet / Getty)
The condition is terminal. (Yoss Sabalet / Getty)

It is possible to test if someone has the genetic mutation which causes the condition.

One patient took to social media to describe their feelings of having the condition.

They wrote on Reddit: "It was the worst feeling in the world knowing that I was going to die soon and it was only after my diagnosis that my already existing insomnia is growing worse.

Advert

"It's likely to be hereditary so my family is taking tests to see who has it.

"My parents except for me and my siblings don't have it, I feel so bad for my parents knowing that one day the will go childless.

"They act strong around me but i know inside they are hurting so much and they feel so bad that they have passed this on to us. Even if that's true I still love them."

There are researchers investigating possible ways to treat the condition, but for now it remains incurable.

Advert


Featured Image Credit: Getty Images/torwai/skynesher

Topics: News, Health, Mental Health, Science, World News

Kit Roberts
Kit Roberts

Kit joined UNILAD in 2023 as a community journalist. They have previously worked for StokeonTrentLive, the Daily Mirror, and the Daily Star.

Advert

Advert

Advert

Choose your content:

an hour ago
12 hours ago
13 hours ago
  • an hour ago

    Trump slammed for 'deranged' threat to Iran 'leader' as he issues urgent warning amid Israel attacks

    Donald Trump has been causing a stir over his latest comments on Iran

    News
  • 12 hours ago

    Experts reveal why millennials are abandoning organized religion and what they're doing instead

    Americans are becoming increasingly disassociated with traditional religion, according to a new study's in-depth analysis of millennials

    News
  • 12 hours ago

    Underrated Jennifer Lawrence movie that fans say is 'the best they've ever seen' is leaving Prime very soon

    The movie saw Jennifer Lawrence get her first Oscar nomination

    Film & TV
  • 13 hours ago

    'Cause' of tragic nightclub roof collapse that killed 236 people revealed as owners are arrested

    The roof of the Dominican Republic-based club collapsed in April

    News
  • Tragic story of family who inherited incurable sleeping disease that killed dozens over multiple generations
  • Chilling audio of emergency call reveals new details after two Democratic lawmakers were shot in their homes
  • Man with ultra-rare 'vampire disease' reveals what it's like living with the condition
  • Experts find Alzheimer's disease could be linked to common virus that over 3,800,000,000 people have