Is this the worst medical condition in the world?

DEFTLEFTHAND

Fatal Familial Insomnia.

I watched a doc on it during the week.One of the rarest conditions in the world. It's a hereditary condition present in only 40 families globally.


The condition affects the part of the brain which controls sleep.


Once it sets in the suffeerr has ten months to live.


The final 6 months are spent entirely awake, the brain refuses to go into restorative sleep. Doctors have induced comas on victims but scans show that the brain is still awake. The sufferer eventually succumbs to nervous exhaustion.


There's no cure, the families who carry the gene are advised not to breed, there's a 50 50 chance of offspring inheriting. It usually onsets in late 40s early 50s.



Has to be the worst way to die.

Squall Leonhart

Saw an episode of Law and Order SVU where someone had that. Had never heard of it before. Mad illness.

Birneybau

That's pretty horrible and I'll give that documentary a miss.

This though:

https://en.wikipedia.org/wiki/Trigeminal_neuralgia

To describe the pain sensation, people often describe a trigger area on the face so sensitive that touching or even air currents can trigger an episode; however, in many people, the pain is generated spontaneously without any apparent stimulation. It affects lifestyle as it can be triggered by common activities such as eating, talking, shaving and brushing teeth. The wind, chewing, and talking can aggravate the condition in many patients. The attacks are said by those affected to feel like stabbing electric shocks, burning, sharp, pressing, crushing, exploding or shooting pain that becomes intractable.

TerrorFirmer

It's pretty horrific, a slow descent into total and utter madness, by the end people are raving lunatics unable to speak or display any real level of intelligence. Reading some of the detailed accounts of those affected is harrowing.

kneemos

Have they tried watching Michael D giving a speech?

wakka12

Absolutely awful but Im sure theres worse. I dont see how alzheimers is any better for instance, knowing you wont remember your beloved friends and familys faces or names in a short time and youll have to be cared for like a baby until you die

Most ways to die are just horrible , even heart attacks and strokes and cancer look terrifying to me despite most people dying that wau

Obvious Desperate Breakfasts

I’d be trying to get my hands on some Nembutal if that was my fate.

DEFTLEFTHAND

The only humane treatment for this condition is Euthanasia on onset.

It's unethical to allow a human being to suffer such a fate.

judeboy101

Boneitis

tigger123

DEFTLEFTHAND wrote: »

The only humane treatment for this condition is Euthanasia on onset.

It's unethical to allow a human being to suffer such a fate.

There's surely better things to be focusing on of a Saturday afternoon.

DoozerT6

tigger123 wrote: »

There's surely better things to be focusing on of a Saturday afternoon.

And yet it's a very valid point. Why wait for such a miserable, inevitable death when you could end it quickly while you still have some of your faculties.

I've often thought that if I was diagnosed with some sort of unquestionably terminal condition like that, that I would seek euthanasia. Of course I cannot say for definite, I would need to be in that position to know for sure - but from outside, looking in, I would hope to end it. I am single with no dependants. Why would I put my elderly parents through the trauma of having to see me die a little every day with no hope in sight?

Bicyclette

Birneybau wrote: »

That's pretty horrible and I'll give that documentary a miss.

This though:

I've had trigeminal neuralgia. I've also had Frozen Shoulder - which is up there with it. But they are minor compared to some of the serious ****. You recover from them and end up being a lot stronger as a result.

Motor Neuron Disease is evil. I watched my father die from it almost 30 years ago and I still get upset talking about it. The person suffers from a creeping paralysis and eventually suffocate to death because the motor neurons in their lungs stop them working.

Obvious Desperate Breakfasts

Bicyclette wrote: »

I've had trigeminal neuralgia. I've also had Frozen Shoulder - which is up there with it. But they are minor compared to some of the serious ****. You recover from them and end up being a lot stronger as a result.

Motor Neuron Disease is evil. I watched my father die from it almost 30 years ago and I still get upset talking about it. The person suffers from a creeping paralysis and eventually suffocate to death because the motor neurons in their lungs stop them working.

I’m so sorry. Motor neurone disease is cruel. I know Stephen Hawking lived a long time but he was an outlier. I saw a very thoughtful BBC documentary about a man with motor neurone disease who wants to go to Switzerland to procure assisted dying. It’s called How To Die: Simon’s Choice. It wasn’t a polemic - there were different points of view expressed in the documentary, some opposing viewpoints coming from very close loved ones of his. It was heartbreaking to see this larger-than-life man decline. And only two years before he was diagnosed with MND, his step-daughter died of Ewing’s sarcoma at only the age of 18. Real cool of you, life, real cool.

ILoveYourVibes

Very sad. Interesting though. Makes me feel lucky to get the bit of sleep i manage to.

Muahahaha

Dont know the name of the condition but there is one where you cannot get exposed to any kind of sunlight, direct or indirect. You have to live your whole life in darkness and can never go outside when the sun is up. Must be very frustrating, it would be like living half a life.

Ten of Swords

I can't think of anything worse than cerebromedullospinal disconnection, also known as locked in syndrome, literally nothing at all.

Birneybau

Muahahaha wrote: »

Dont know the name of the condition but there is one where you cannot get exposed to any kind of sunlight, direct or indirect. You have to live your whole life in darkness and can never go outside when the sun is up. Must be very frustrating, it would be like living half a life.

Vampirism?

SEPT 23 1989

The one where the skin starts turning into wood was nasty

Obvious Desperate Breakfasts

Ten of Swords wrote: »

I can't think of anything worse than cerebromedullospinal disconnection, also known as locked in syndrome, literally nothing at all.

Or Christopher Reeve’s type of paralysis where the skull actually has to be reattached to the spine. Nightmare stuff right there. With that type of paralysis, breathing is even difficult because the diaphragm can’t be moved.

Faith+1

God this is a depressing thread

This thread has me wishing I could afford to put aside a Dignitas stash

Bigbagofcans

Ten of Swords wrote: »

I can't think of anything worse than cerebromedullospinal disconnection, also known as locked in syndrome, literally nothing at all.

This has to be the worst. Terrifying to even fathom.

https://www.theguardian.com/world/2009/nov/23/man-trapped-coma-23-years

Mad_maxx

DEFTLEFTHAND wrote: »

Fatal Familial Insomnia.

I watched a doc on it during the week.One of the rarest conditions in the world. It's a hereditary condition present in only 40 families globally.


The condition affects the part of the brain which controls sleep.


Once it sets in the suffeerr has ten months to live.


The final 6 months are spent entirely awake, the brain refuses to go into restorative sleep. Doctors have induced comas on victims but scans show that the brain is still awake. The sufferer eventually succumbs to nervous exhaustion.


There's no cure, the families who carry the gene are advised not to breed, there's a 50 50 chance of offspring inheriting. It usually onsets in late 40s early 50s.



Has to be the worst way to die.

When I read stories like this, I'm reminded why I'm atheist

D3V!L

judeboy101 wrote: »

Boneitis

It was always my biggest regret, not curing my Boneitis !!

Mad_maxx

DEFTLEFTHAND wrote: »

The only humane treatment for this condition is Euthanasia on onset.

It's unethical to allow a human being to suffer such a fate.

Hopefully euthanasia is made legal here soon, I'm politically on the right quite e firmly but would not give it a seconds thought

banie01

A Tyrant Named Miltiades! wrote: »

This thread has me wishing I could afford to put aside a Dignitas stash

Ditto.
I have a family history of MND and it's a soul destroying illness not just for the person afflicted but those caring for them too.

I have a few ongoing health issues at the moment that luckily for me are responding well to both treatment and my own effort to manage and improve them.

I have always said though, that should an MND diagnosis ever come my way...
Myself and a couple of vials of Insulin will be taking the decision on the time and place of my death, rather than diminishing gradually and becoming a burden.
I'd want to be sure my family remember me and how I am, rather than the husk that MND left them caring for.

banie01

Ten of Swords wrote: »

I can't think of anything worse than cerebromedullospinal disconnection, also known as locked in syndrome, literally nothing at all.

It's where MND eventually leads.
Any illness or condition that leads to a conscious and aware person, being trapped in an unresponsive and uncommunicative body is IMO a date worse than death.

Birneybau

Birneybau wrote: »

That's pretty horrible and I'll give that documentary a miss.

This though:

https://en.wikipedia.org/wiki/Trigeminal_neuralgia

I have Trigeminal Neuralgia and have differed awful episodes, but it is certainly not the worst thing one can get. If other treatments fail there is a pretty effective bit of brain surgery which can cure it. But they always try all sorts of other treatments many times first, do usually the patient has to go through an “apprenticeship of suffering” before getting relief. Very fortunately for me, a bit of my own research of medical papers I came upon what is a very simple effective treatment, at least in my individual case. An ordinary antihistamine tablet taken daily has cut down my episodes and severity at least threefold. To do with damping down the mast cells around the nerve. My neurologist is impressed and suggesting it to other patients, to trial its efficacy himself.

banie01

banie01 wrote: »

Ditto.
I have a family history of MND and it's a soul destroying illness not just for the person afflicted but those caring for them too.

I have a few ongoing health issues at the moment that luckily for me are responding well to both treatment and my own effort to manage and improve them.

I have always said though, that should an MND diagnosis ever come my way...
Myself and a couple of vials of Insulin will be taking the decision on the time and place of my death, rather than diminishing gradually and becoming a burden.
I'd want to be sure my family remember me and how I am, rather than the husk that MND left them caring for.

I witnessed my cousin going from perfectly strong and fit to dead within less than a year with a rapid case of MND. Thankfully her death was managed very well in the hospice and she died very peacefully, her last scribbles a day before being “bring in winter clothes from left wardrobe”.

Obvious Desperate Breakfasts

banie01 wrote: »

Ditto.
I have a family history of MND and it's a soul destroying illness not just for the person afflicted but those caring for them too.

I have a few ongoing health issues at the moment that luckily for me are responding well to both treatment and my own effort to manage and improve them.

I have always said though, that should an MND diagnosis ever come my way...
Myself and a couple of vials of Insulin will be taking the decision on the time and place of my death, rather than diminishing gradually and becoming a burden.
I'd want to be sure my family remember me and how I am, rather than the husk that MND left them caring for.

I’m really mad that I can’t take things into my own hands with my cancer. So I just have to wither away? Fück that shït but I have no other choice.

I’ve heard opponents of assisted dying say “Sure, they can just commit suicide. It’s easy!”. Ah no, it isn’t. The only foolproof methods are the really violent ones. And forcing people to go abroad means they have to take the trip while they are still physically able to go unassisted which means they have to check out too soon.

Thankfully though, in practice there doesn’t seem to be much appetite in Ireland or the UK for prosecuting loved ones who accompany people to Dignitas.

fryup

impotency ?

Bigbagofcans

fryup wrote: »

impotency ?

A blessing if you're a priest.

Ten of Swords

Bigbagofcans wrote: »

This has to be the worst. Terrifying to even fathom.

https://www.theguardian.com/world/2009/nov/23/man-trapped-coma-23-years

A very sad story but I did a little reading up on it and it is considered to be a hoax, whether malicious or not is undecided but the facilitated communication is described as psuedoscience and the supposed communication was either due to a poor understanding of the technique or misrepresentation by the facilitator. Doctors believe he was always in a persistent vegetative state and never communicated with anyone.

Still, unbelievably sad if true, I don't think anyone could survive mentally intact after being a prisoner in your own body for 20 years

Clondalphian

Muahahaha wrote: »

Dont know the name of the condition but there is one where you cannot get exposed to any kind of sunlight, direct or indirect. You have to live your whole life in darkness and can never go outside when the sun is up. Must be very frustrating, it would be like living half a life.

xeroderma pigmentosum

There's a film called Midnight Sun on Netflix in which the main character suffers from it.