FATAL FAMILIAL INSOMNIA: THE SICKNESS THAT KILLS BY STEALING FROM YOU (SYMPTOMS, CAUSES, AND CURE)

Ronald harrington
5 min readNov 18, 2020

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wide open eyes unable to sleep
fatal familial insomnia

Fatal familial insomnia, which is also abbreviated as FFI, is a rare hereditary genetic degenerative brain disorder disease, with sleeping problems (INSOMNIA) as its major characteristic. This insomnia starts unnoticeably mild, but gradually and continually worsens till it begins to affect the brain plus other symptoms that come along with it as shown later in this post.

This also further degenerates to significant physical or mental/ brain disorder and further down to hallucinations and delirium.

How many are estimated to have FFI

crowd of people cheering

“FFI is an extremely rare disorder. The exact incidence and prevalence of the disorder are unknown. The sporadic form of FFI, known as sporadic fatal insomnia (SFI), is extremely rare and has only been described in the medical literature in about two dozen people. Collectively, prion disorders affect about 1 in 1,000,000 million people in the general population per year. Genetic prion diseases are believed to make up about 15% of all individuals with prion diseases. Because rare diseases often go undiagnosed or misdiagnosed, it is difficult to determine their true frequency in the general population. FFI affects men and women in equal numbers. The average age of onset is 45–50 years old, although the disorder has been described as occurring in individuals in their teens and as late as their 70s. FFI has been described in populations around the world”

(Source: https://rarediseases.org/)

FATAL FAMILIAL INSOMNIA SYMPTOMS

A man exhibiting symptoms of sickness
FFi Symptoms

The symptoms begin to be noticeably significant from ages between about 40 to 62 years. In some rare cases, it begins even at a younger age. The symptoms of this sickness depend on the body system of each person i.e. there is no particular symptom associated with this sickness except for the primary symptom which is the inability to sleep, which cuts across the board in every carrier of the disease but generally, other symptoms are:

  • Trouble/ difficulty staying asleep
  • Trouble/ difficulty falling asleep
  • High blood pressure
  • Unexplainable weight loss
  • Memory problems (deteriorating mental ability)
  • Rapid heart rate
  • Problems seeing well
  • Difficulty in concentrating or thinking straight
  • Memory loss
  • Speech problems
  • Profuse sweating
  • Fever
  • Loss of appetite
  • Unknowing movement and kicking while sleeping
  • Muscle stiffness, twitching, and spasms
  • Sexual dysfunction

HOW THIS HAPPENS…(Causes of FFI)

person asking how

FFI is caused by the mutation (abnormal function) of the Prion Related Protein (PRNP) gene which produces prion proteins. This abnormal function produces faulty prion proteins that harm the nervous system which brings about an attack on the THALAMUS. The Thalamus is a part of the brain that allows synchronization of other different parts of the same brain that controls sleep, appetite, and body temperature. So imagine an attack on the thalamus? It begins to malfunction. These faulty prion proteins, gradually and continually, gather together in the thalamus, and once the gathering, they begin to attack and cause the symptoms of the FFI to become visibly severed from this mild state that they have been in before.

DIAGNOSIS

a diagnosed patient

Since this sickness is genetic, every doctor, in trying to know your FFI status, will first ask if you have any family member with this kind of sickness. If your response is positive, he will then carry out a genetic test that will strongly suggest or confirm the FFI, before he furthers with the symptoms you are experiencing, especially your sleeping status, because this is the major symptom involved in the FFI disease. Sometimes, they may want to investigate further by keeping track of your sleep patterns to ascertain the regularity or irregularity you experience. This might mean that you sleep in the hospital for a period of time. They will also record your heart rate, body temperature, etc. This can help them further in the diagnosis. If this first stage is pointing towards Fatal Familial Insomnia, the doctor might need to further carry out a PET scan. This further helps the doctor Confirm the FFI as this test concentrates so much on the abnormalities of the thalamus and as we now know, the thalamus is that part of the brain that controls sleep, appetite, and body temperature.

CAN I TREAT THIS SICKNESS?

a group asking a question

I am sorry to say, but currently, there is no confirmed cure for this sickness but researchers are tirelessly working to arrive at a cure and also means and methods to prevent it. Though a few medications can effectively help you manage some or all of the situation temporarily. For example, doctors can prescribe:

1. Promind Complex — New #1 Brain Offer (this works for the brain and mental health in general. learn more — affiliate link)

2. Melatolin Plus (this aids your sleeplessness or inability to stay asleep. learn more — affiliate link)

LIVING WITH FFI/ LIFE EXPECTANCY

life expectancy
life expectancy

The symptoms of FFI can be in the body for a very long time (mild stage) without being noticed. Within one to two years, after being noticed, they rapidly grow and the disease degenerates so worse within a short time. That is to say, it has been incubated for so long and has eaten deep into the system. As before described, there is no known cure yet for this sickness but research is actively carried out by scientists, though SLEEP AIDS can provide perfect temporary relief.

IN SUMMARY

in summary
summary

- It is a rare genetic disorder targeting the Thalamus.

- Its main characteristic is the inability to sleep (insomnia/ sleeplessness) or the inability to stay asleep.

- This disorder causes other problems like high blood pressure, loss of appetite, sight problems, speech problems to mention a few

- There is currently no known cure yet for the Fatal Familial Insomnia but some specific symptoms can be treated like the muscle spasm symptom, high blood pressure, etc

  • The hard truth, people with FFI don’t tend to live for so long (say between 1–4 years) before they finally die.

Some of the links in the post are affiliate links (as first indicated in parenthesis) so if you make a purchase through them, we will receive a small commission at no extra cost to you.

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Ronald harrington
Ronald harrington

Written by Ronald harrington

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writer and medical health researcher

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