By Cameron Davies
Published 12:06 EST, Sun October 25th, 2021
What is Alice in Wonderland syndrome (AIWS)?
Although it might sound like a fairytale filled with beautiful scenery and heavenly feeling, Alice in Wonderland Syndrome, more commonly known as AIWS, is a fatal disorder that creates hugely disorientating hallucinations and other intense symptoms.
Doctor Caro Lippman first discovered this rare disease in 1952 before it was named in 1955 by John Todd. It was defined as a neurological disease that affects the vision of young people, particularly between the ages of six and twelve. It was discovered when a six-year-old boy complained of a headache. In addition to this headache, he explained the symptom of seeing distorted objects, some of which looking further away or closer than they were as if his eyes were acting as a partial magnifying glass. He even explained that it was more prevalent during the evenings and caused intense pain. Several tests were conducted, including magnetic resonance testing and Epstein-Barr virus testing, which came back negative. As a result, no diagnosis could be made, and eventually, the child died. This is because, analytically, testing does not reveal small changes to the brain, which makes this disease devilishly hard to detect (Faroq and Fine, 2017).
What causes AIWS?
AIWS is a particular syndrome onset as a result of several different prior diseases. The first of which is known as Creutzfeldt-Jaukob disease (CJD), which affects the brain, and gradually worsens over time. It originates from a protein known as a ‘prion’ which is exceptionally infectious compared to viruses and bacteria because they cannot be treated by antibiotics or extreme heat. It causes distressing symptoms, including slurred speech, memory loss, loss of intellect, and vision problems, which get worse until it causes death as the brain shuts down. One of the symptoms caused amongst these is AIWS, as the brain’s messages from the optic nerve weaken. This distorts objects (Anon, 2021). However, this disease is very difficult to contract, and treatments are being pioneered to alleviate the symptoms and find a cure.
There is also an additional cause known as the Epstein-Barr virus. This is a type of herpes, which is another contagious disease particularly affecting young children and transmitted via bodily fluids. In addition to causing AIWS, the Epstein-Barr virus can cause mono and other illnesses. Symptoms caused include headaches, fever, fatigue, swollen liver, and rash. This virus can also become latent, where it does not cause any symptoms but can re-emerge at different times (Anon, 2021). So far, there is no treatment for this virus and no vaccination. However, drinking plenty, taking medications to alleviate symptoms, and resting avoids contracting this virus and potentially developing AIWS.
Neurology behind it
AIWS is a very complicated syndrome neurologically, especially considering that on the initial Magnetic Resonance Imaging (MRI), Computed Tomography (CT), and serological testing, it cannot be detected. However, there are several signs which can point neurologists and doctors in the right direction in today’s world to tell them whether the patient is suffering from it, especially in combination with the description of symptoms. These include elevated proteins in the cerebrospinal fluid—the liquid around your brain and spinal cord—which could potentially be the proteins from CJD, and this was present in the 6-year old boy who was suspected of having caused CJD.
Additionally, upon closer inspection, lower ADC levels may show AIWS. ADC level, short for the Apparent Diffusion Coefficient, measures the diffusion of water within the tissue. With less water diffusing into the tissue, this can disrupt the operation of the brain, which may cause distorted revision and headaches. These two signs are useful for scientists to detect whether AIWS has been caused in a situation where other tests come back negative, or the Epstein-Barr virus test is negative despite ongoing symptoms (Niknejad, 2016).
Typical symptoms in more detail and demographic
As previously stated, the majority of cases seen affect young children around the age of six years, and the percentage of males is greater than that of females, though this may be due to the limited number of cases recorded of this disease. In children, a specific symptom personal to this demographic is a migraine, which typically is stronger than a headache, as well as body and object dysmorphia, the trademark sign of AIWS, as the lack of clear images with objects is seen in the story ‘Alice in Wonderland.’
Although the idea of not being able to see an object or body correctly seems rather harmless, and just like any other kind of hallucination, it can be extremely difficult to visualize anything when optics are so distorted, not to mention the mental deficits it can cause children, leading to going mad and psychologically unstable as a result of losing a sense of reality—30% of adolescents report these kinds of non-clinical symptoms. In addition to the mental issues, there are several physical issues caused such as nausea, dizziness, and agitation. The symptoms are also shown to worsen over time, as occurs with CJD (Anon, 2016 and Bittman et al, 2014).
Treatment options and conclusion
At this point, as with CJD and Epstein-Barr virus, there is no treatment available, despite the option to alleviate some of the hallucinations with drugs. Furthermore, because of the nature of the diseases causing AIWS, most patients who experience AIWS end up dying. However, the ICD is looking into the disease and researching possible cures with the growing number of patients contracting these neurological diseases. However, on a lighter note, 50% of patients suffer with the symptoms and lead a normal life following this syndrome (Naarden et al, 2019). It is another mystery of our incredibly weird and wonderful brain, which we are yet to understand fully, but it makes it all the more interesting and exciting.
Cameron Davies, Youth Medical Journal 2021
Reference list
Anon. (2021). About Epstein-Barr Virus (EBV). [online] CDC. Available at:
https://www.cdc.gov/epstein-barr/about-ebv.html [Accessed 11 Sep. 2021].
Europe PMC. (2016). Europe PMC. [online] Europepmc.org. Available at:
https://europepmc.org/article/med/22086425 [Accessed 11 Sep. 2021].
Farooq, O. and Fine, E.J. (2017). Alice in Wonderland Syndrome: A Historical and Medical Review. Pediatric
Neurology, [online] 77, pp.5–11. Available at: https://pubmed.ncbi.nlm.nih.gov/29074056/ [Accessed 11 Sep. 2021].
Mohammad, Taghi Niknejad. (2011). Apparent diffusion coefficient | Radiology Reference Article |
Radiopaedia.org. [online] Radiopaedia.org. Available at: https://radiopaedia.org/articles/apparent-diffusion-coefficient-1?lang=gb [Accessed 11 Sep. 2021].
Naarden, T., ter Meulen, B.C., van der Weele, S.I. and Blom, J.D. (2019). Alice in Wonderland Syndrome as a
Presenting Manifestation of Creutzfeldt-Jakob Disease. Frontiers in Neurology, [online] 10. Available at:https://doi.org/10.3389/fneur.2019.00473. [Accessed 11 Sep. 2021].
NHS Choices. (2021). Overview – Creutzfeldt-Jakob disease. [online] NHS choices. Available at:
https://www.nhs.uk/conditions/creutzfeldt-jakob-disease-cjd/ [Accessed 11 Sep. 2021].
Stefan Bittmann, M., Weissenstein, A. and Luchter, E. (2014). Alice in Wonderland syndrome: A rare
neurological manifestation with microscopy in a 6-year-old child. Journal of Pediatric Neurosciences, [online] 9(3), p.303. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302569/ [Accessed 11 Sep. 2021].
Wikipedia Contributors. (2021). Alice in Wonderland syndrome. [online] Wikipedia. Available at:
https://en.wikipedia.org/wiki/Alice_in_Wonderland_syndrome#:~:text=With%20over%2060%20associated%20symptoms,with%20Alice%20in%20Wonderland%20syndrome. [Accessed 11 Sep. 2021].
Youth Medical Journal 