Siblings suffer from a rare sleep disorder which can kill them if they sleep
Insomnia can really get you down and while sleeping problems can cause an infinite number of negative health problems, it can still be cured by medication de-stressing techniques and improved lifestyle. You have the ability to rid yourself of insomnia and experience a good night’s sleep. But!! Imagine what happens when despite of you requiring sleep, you aren’t allowed to sleep at all. Could you even contemplate a life without sleep and is it actually possible?
Well meet Lachlan, 28 and Hayley, 30, two siblings with a rare sleep disorder inherited genetically and so cruel that it forbids them from sleeping because if they did, it would kill them.
1 Both Siblings Suffer from a Rare Sleep Disorder called FFI
Lachlan and Haley Webb live in Queensland, Australia. Both are suffering from a hereditary disease acquired from their mother. The deadly condition called Fatal Familial Insomnia or FFI is a devastating disease which may strike a fatal blow without warning should anyone suffering from it chose to sleep.
Imagine being unable to close your eyes knowing that if you do, you may never awake. FII is a rare genetic disorder and is prevalent in just up to 50 families worldwide. The saddest fact about FFI is that it is incurable.
2 Fatal Familial Insomnia Is a Killer Disease
The siblings’ first tryst with the dreaded disease was when their grandmother fell ill during their teenage years. Their mother succumbed to FFI at the age of 61. FFI gradually took a heavy toll on their family which included their aunt who died at 42 and their mother’s brother, their Uncle, who died very young when he was just 20 years old.
It was only when their grandmother started exhibiting symptoms of the fate disease did the family learn of their unusual but devastating predicament. Hayley recalls her grandmother lost her eyesight; she suffered from dementia, hallucinations and also encountered loss of speech. When she was finally diagnosed with FFI, the family got the shock of their lives as they all had it too. The siblings with a sleep disorder now realize that they themselves are in a dangerous position.
3 What Is Fatal Familial Insomnia?
FFI literally prevents the body’s rejuvenating process while asleep. It causes the unusual symptom of making a patient feel as if they suffered form acute insomnia and was awake for months. It does not allow a person to fall into the state of deep sleep which ultimately causes the body to deteriorate where there is marked decrease in immunity and one becomes susceptible to related diseases such as dementia.
In FFI disease, the nerve cells are damaged and sponge like holes appears in the thalamus, which is the area of the brain responsible for sleep regulation.
4 A Family Curse with No Hope in Sight
Hayley Webb, who is a reporter for ‘Nine News’ said, “In my early teens I remember becoming aware of it, aware we had this family curse.”
She stated that there was a day when she had left for her new job on Sunshine Coast and her Mother had wished her goodbye in the morning even congratulating her on the new job. But when she returned home, her mother called her Jillian and thought Hayley was instead the housekeeper. That’s what FFI does to you; it makes you lose control of your senses with acute memory loss.
5 Scientists Are Yet To Find a Cure
FFI has an extremely slow progression rate and attacks a patient in 4 stages; lack of sleep, hallucinations, insomnia and finally dementia and death. The stage of dementia can even last till four months.
Till date, there is no cure for Fatal Familial Insomnia where scientists are still in research mode to formulate a gene therapy of sorts. Both Lachlan and Haley are siblings with a sleep disorder for which there may be no hope.
Yet they are part of a new pioneering research study currently in process at the University of California. Its lead researchers are Eric Mince and Sonia Vallabvh who are trying hard to locate the gene in order to discover a cure.