A 25-year-old Reddit user has recently complained about a rare and undiagnosed disease that doesn’t allow them to sleep. The user disclosed the condition in a post on Reddit’s popular AMA- Ask Me Anything-subreddit. The case is a bit similar to a condition called Fatal Familial Insomnia.
The user said the doctors haven’t yet fully understood the condition and don’t have a name for it. The user also expressed fear that the disease would soon lead to their death as they battle to get sleep.
They went on to share their experience with the sickness and seek advice and information from other users. They did this with the hope of finding someone else who could be familiar with the condition.
In response to the Redditor’s post, thousands of comments began to pour in from concerned and interested users. The issue attracted 11,000 upvotes and more than 1,600 comments. Some of the comments tried to identify the illness.
Others suggested a number of new treatment options they could try out. In addition, others recommended some trusted specialists and therapies. But what is this strange illness all about?
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An Undiagnosed Disease Similar to Fatal Familial Insomnia
According to the Reddit user with username BPD-Recovery, this disturbing disease is so uncommon that it doesn’t yet have a name. “There is no name for my condition. I have progressively deteriorated over 2 years. It began with hallucinations, irritability, extreme mood swings, exhaustion, etc.”
Explaining their experience with the illness, the user lamented that they find it difficult to get sleep. Also, the condition robs them of energy for most of the day. “Wake up. Extremely exhausted. Can barely move,” they stated. “Energy comes barely online around 3 p.m. Energy comes fully online around 7 p.m. Feel great then.”
Disclosing the extent of bodily damage the disease has caused, the user added that the condition has affected their spine. “My spine completely locked up, and I have not experienced normal sleep since,” they complained.
“I have had severe muscular pain since 16. Initially, [it] started like carpal tunnel. Muscles progressively get worse over time. In time, discovered all muscle issues were coming from the left shoulder,” BPD-Recovery wrote.
“Now, I cannot breathe normally due to muscle tension,” the user continued. “My torso is now lightly twisted away from my problem side; My spine causes my sleeplessness. When my back was better, and I could release it, my sleep would immediately resume.”
Sadly, the impact of the condition has spread to a number of new places in the user’s body. It has also affected their nervous system. “In the last 4 months, it’s begun affecting my heart,” the user further complained.
“My nervous system is f*****. I have severe dysautonomia, which means my heart and blood pressure go from super low to super high erratically. I’ve been in and out of emergency rooms for borderline heart attacks about 7 times in the past 3 months.”
According to the user, they got information that their condition is pretty similar to a disease called Fatal Familial Insomnia. In the words of Healthline, Fatal Familial Insomnia is “a very rare sleep disorder that runs in families.”
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What Triggers Fatal Familial Insomnia?
Fatal Familial Insomnia emerges as a result of a mutation of the PRPN gene. The PRPN gene is responsible for the manufacture of proteins and a number of tissues that work in the brain. This mutation causes damage to the thalamus, which is responsible for maintaining sleep cycles.
Besides disrupting the thalamus’s functions, the mutation also causes the thalamus to lose nerves. Consequently, this gradual loss of nerves results in a range of dreadful symptoms. According to a study, parents who suffer from the disease have a 50% chance of transferring it to their offspring.
What is the Life Expectancy of Someone With Fatal Familial Insomnia?
The life expectancy of people with Fatal Familial Insomnia varies from person to person. That’s because symptoms begin to appear at various ages. For example, symptoms usually show up between the ages of 36 and 62. In a number of cases, they can appear at a much younger age.
Unfortunately, once symptoms appear, the person with the disease may only live for one or two years after.
What are the Four Stages of Fatal Familial Insomnia?
Fatal Familial Insomnia manifests in four stages. As the affected person moves from one stage to the other, the symptoms become more severe. Stage One lasts for three to six months. During this period, basic symptoms such as difficulty with sleep and unusual dreams emerge.
Stage Two lasts from five to nine months. Symptoms during this period include anxiety, depression, mood swings, increased heart rate, difficulty breathing, moving, and walking, as well as profuse sweating. Stage Three lasts for three months.
The sleep cycle is no longer stable, and sleeping problems get even worse. Stage Four runs for up to six months. During this period, the sleep problems get extremely serious, dementia surfaces, and the affected person is likely to go into a coma repeatedly. Ultimately, the disease becomes fatal. There is still no cure for Fatal Familial Insomnia.
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