Teenage Kaya faints more than six times a day. Although the girl is treated for a number of immune diseases, doctors are unable to identify the exact cause of the condition and treat her effectively. What does her everyday life look like?
- 19-year-old Kaya has been experiencing fainting every day for nearly four years
- A teenager suffers from many immune diseases and takes medications that, while helping her fight them, increase the frequency of fainting many times.
- Kaya compared her experiences to those of people with a long-term course of the coronavirus and hopes that if there is progress in treating the wider population, doctors will finally be able to find a cure for her condition.
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Kaya is 19 years old and has several immune diseases. Her biggest concern, however, is fainting, which interferes with everyday functioning and threatens her life and health. The girl began to share thoughts about her health and documented how she faints in the blink of an eye, whether sitting safely at her desk or moving around the house. TikTok watchers even dubbed her a “sleeping beauty” for this rare condition, alluding to classic Disney animations.
- Read also: What could have caused you to faint?
– I pass out more than six times a day, every day, and this state of affairs has been repeated daily for over three years. (…) Believe me, I would like to joke, but this is my life. (…) I faint again and again. Here I was when I tried to go down the stairs but fainted. When I woke up from fainting, I tried to get up off the floor in my room, but fainted again. If you’re wondering why this is happening to me, I still don’t have a definitive answer, but I have a few chronic diseases that have managed to manifest and make me pass out like an absolute maniac. Honestly, I don’t know how I function at least a little at this point, but I’m just going to go ahead and deal with the sarcasm, Kaya confessed on TikTok.
The problems began when she turned nine
Kaya has a functional neurological disorder (FND), a disorder in the way the brain sends and receives signals, which doctors consider to be the leading cause of blackout.
The analogy commonly used to explain FND is the “hardware” analogy – hardware, ie the brain has no structural abnormalities; however, the software, or the way the brain works, has a malfunction that manifests itself in functional neurological symptoms such as fainting. So if my body feels like I’m threatened, it has learned to just shut down (pass out) to protect itself.
Although FND is a major contributor to her fainting, Kaya explained that she has been diagnosed with a number of other conditions that make her symptoms worsen. The teenager was diagnosed with orthostatic tachycardia syndrome, Ehlers-Danlos hypermobile syndrome, chronic fatigue syndrome, persistent vertigo, irritable bowel syndrome, Hashimoto’s disease, Raynaud’s disease, and functional abdominal pain syndrome.
- Read also: Dizziness – causes, diagnosis and treatment of balance disorders
Kaya’s health problems started with a stomach ache that began to bother her around the age of nine. FAPS (Functional Abdominal Pain Syndrome) became extremely severe for her when she turned 12 and was constantly ill for six months. The other ailments, including fainting, started when she was 15 years old. After 2018, her ailments in the form of visual and vestibular problems, dizziness and balance, and migraines began to intensify. She did not receive a formal diagnosis of major disorders until the age of 16.
A dreadful number of diseases
Most of Kaya’s conditions can be classified as dysautonomia, which is the general term for conditions that cause the autonomic nervous system to malfunction. This system affects heart rate, blood pressure, temperature control, digestion, and more.
Kaya also experiences non-epileptic seizures, heat and cold intolerance, blood pooling, dizziness, chronic migraines, vision problems (auras and disorders), light sensitivity, constant dizziness, brain fog, memory loss, sensory problems, anxiety and depression , nausea and digestive problems, tremors and tics, general weakness, chronic pain, cramps, paralysis of limbs and joints, mobility problems and chronic fatigue.
- Read also: “I think I’m going to faint” or where do faints come from?
Due to her ailments, Kaya has been forced to suspend her further education and is unable to drive. In most cases, however, a teenager is able to predict the coming fainting and thus did not suffer too many injuries and contusions.
“Sometimes I feel like a faint is approaching and have a few seconds to act, but half of them are unexpected.” I passed out standing, sitting, or lying down, even while talking. Each of the syncope can be very different from each other, making it very difficult to find the pattern. Sometimes I may stop and it may pass, but I don’t really have any control over them. In certain circumstances, I can get tense and be “turned on”, when, for example, when family and friends visit me and I can hold out, not faint for a moment, but as soon as I relax and lose my vigilance, I “drift away”. I literally passed out for a second as the front door closed behind our guests (…) The energy required to stay aware completely drains my sparse reserves, and their decline is inevitable – this usually results in numerous and sharper faints that drain my nonexistent energy even further. There is no set treatment plan for my condition, and there is no single doctor who is experienced in all my conditions – confessed the teenager.
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In the further part of the conversation with the teenager’s website, she admitted that doctors are not able to help her in a proper and comprehensive manner and that she herself has to “treat” herself based on the information provided by them. Because the multitude of her conditions affect many body systems, there are few medications that can easily relieve her symptoms. Many drugs actually make her situation worse, so Kaya tries to find the best combinations for herself by trial and error.
– Interestingly, I noticed that people suffering from chronic COVID-19 have many symptoms similar to mine. Perhaps as a larger population experiences the same symptoms, there will be some progress in diagnosis and treatment, which may benefit me in the near future, Kaya concluded.
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